Hydration and symptoms in the last days of life

BMJ Supportive and Palliative Care, 2019 August 31 (online first)

Martine E Lokker, Agnes van der Heide, Wendy H Oldenmenger, et al

Consensus about the most appropriate management for terminally ill patients with limited oral fluid intake is lacking. The objective of this study which included 371 patients, is to investigate to what extent the amount of fluid intake, preceding and during the dying phase, is related to the occurrence of death rattle and terminal restlessness. The authors suggest that caution with fluid intake to prevent development of death rattle does not seem to be necessary. They further conclude that a higher amount of fluid intake during 48–25 hours before death may be associated with the occurrence of terminal restlessness during the last 24 hours of life. These results suggest that actively providing dying patients with artificial fluid may not be beneficial.

Fulltext available in BMJ Supportive and Palliative Care

'I've no fear of dying alone': exploring perspectives on living and dying alone

Mortality, 2019 24(1) p. 17-31
Caswell, Glenys; O'Connor, Mórna

This paper reports findings from a study which explored ways of investigating individuals' perspectives on dying alone at home. For the older people, the idea of dying alone was less problematic than the idea of needing care and support from others, and the perceived loss of independence that this would entail. The nurses would prefer no one to die alone, but believed they had seen patients managing their own dying so that they could be alone at the moment of death. The paper suggests that dying alone may be a problem for survivors, rather than for the person who is dying.

What role do death doulas play in end-of-life care? A systematic review

Health and Social Care in the Community, 2018, September 26th

Deb Rawlings; Jennifer Tieman; Lauren Miller-Lewis; Kate Swetenham

A systematic review was conducted to explore the role and potential implications for models of care delivery. Included were articles that describe the role/work of a death doula or a death midwife in the context of end-of-life care, or death and dying. 

Fulltext available in Health and Social Care in the Community

Difficulties for a practitioner preparing a family for the death of a parent: a narrative inquiry

Mortality, 2018 23(3) p 247-260
Macpherson, Catriona

A practitioner inquiry within an NHS specialist palliative care context used narrative methods to explore difficulties faced by practitioners when assisting a family in the process of preparing a child for the death of a parent.

Why is Meaning-Centered Group Psychotherapy (MCGP) effective? Enhanced sense of meaning as the mechanism of change for advanced cancer patients

Psycho-oncology; Feb 2018; vol. 27 (no. 2); p. 654-660
Rosenfeld, Barry; Cham, Heining; Pessin, Hayley; Breitbart, William

The authors of this study looked at the data from two randomised controlled trials to advance understanding of the effectiveness of MCGP.  They suggest the findings support MCGP as a way of enhancing a sense of meaning which improves quality of life and decreases psychological distress.

Addressing a patient's hope for a miracle

Journal of Pain and Symptom Management; 2018 55(2) p. 535-539
Shinall, Myrick C; Stahl, Devan; Bibler, Trevor M

Ill patients may make decisions to continue aggressive life-prolonging care based on hope for a miraculous recovery, and clinicians can find goals of care discussions with these patients extremely challenging.This case presents a typology of ways patients express hope for a miracle along with analysis of the motivations and beliefs underlying such hopes and suggestions for tailored responses by palliative care providers.

The Patient Dignity Inventory: just another evaluation tool? Experiences with advanced cancer patients

Palliative & Supportive Care 2017 June 21, pp1-7

María Rullán, María Arantzamendi, Ana Carvajal, Marina Martínez, Amaia Saenz de Ormijana, Carlos Centeno

The aim of the present work was to generate a better understanding of the experiences of healthcare staff when using the PDI. The authors conclude that as well as its intrinsic therapeutic value, it often led to a meaningful conversation with the patients on the meaning of life, dignity and other sensitive issues related to the process of advanced illness.

Fulltext available in Palliative and Supportive Care

How can nurses support relatives of a dying patient with the organ donation option?

Nursing in Critical Care, Jul 2016, vol. 21, no. 4, p. 214-224

Mills, Leanne, Koulouglioti, Christina

The purpose of the literature review was to summarise evidence related to nursing support for a dying patient's family with the option of organ donation. The authors concluded that clear information, sensitively and professionally delivered, helped families understand their loved ones' condition.  This in turn helped them to accept death and to consider the option of organ donation. 

Desire for hastened death: how do professionals in specialized palliative care react?

Psycho-oncology, May 2016, vol. 25, no. 5, p. 536-543

Galushko, M, Frerich, G, Perrar, K M, Golla, H, Radbruch, L, Nauck, F, Ostgathe, C, Voltz, R

This study aimed to identify the responses of health professionals working in specialist palliative care to patients' desire for hastened death (DHD).  It identified a number of responses that related to the patients and to themselves as practitioners. The authors concluded that profound personal and professional development that strengthens their own resilience is necessary to respond to the challenges presented by DHD as well as establishing helpful relationships with patients.

What influences attitudes towards clinically assisted hydration in the care of dying patients? A review of the literature

BMJ Supportive and Palliative Care 2015;5:3 223-231

Miriam J Gent, Sarah Fradsham, Graham M Whyte, Catriona R Mayland

The aim of the review is to describe the attitudes and knowledge of patients, families, healthcare professionals and the general public regarding clinically assisted hydration (CAH) in the care of dying patients. Developing international evidence suggests that cultural norms and ethical principles of a family, population or healthcare environment influence attitudes towards CAH, particularly where CAH has symbolic meaning; representing care, hope and trust. However, there is surprisingly little robust evidence regarding dying patients, or the wider general public's views, on the perceived value of CAH in the last days and hours of life.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Unexpected death in palliative care: what to expect when you are not expecting

Current opinion in supportive and palliative care, Dec 2015, vol. 9, no. 4, p. 369-374

Hui, David

When death occurs suddenly and earlier than anticipated, it is considered as an unexpected death. In this article, the author discusses when death is expected and unexpected, and reviews the frequency, impact, causes, and approach to unexpected death in the palliative care setting. Unexpected death has significant impact on care, including unrealized dreams and unfinished business among patients, a sense of uneasiness and complicated bereavement among caregivers, and uncertainty in decision making among healthcare providers. 

Social media and palliative medicine: a retrospective 2-year analysis of global Twitter data to evaluate the use of technology to communicate about issues at the end of life

BMJ supportive & palliative care, June 2015  5(2):207-12
Nwosu AC;  Debattista M;  Rooney C;  Mason S.

The scope and breadth of the use of Twitter to discuss end-of-life care has not previously been reported. The authors' aim was to determine the frequency, sentiment and trend of Twitter 'tweets' containing palliative care-related identifiers (hashtags) and/or phrases sent by users over a 2-year period.  They found that a lot of discussion about palliative care is taking place on Twitter, and the majority of this is positive. Social media presents a novel opportunity for engagement and ongoing dialogue with public and professional groups. 

• Fulltext available in BMJ Supportive and Palliative Care
• • Available in print in Arthur Rank House Library, Brookfields Hospital

Existential concerns about death: a qualitative study of dying patients in a Danish hospice

American Journal of Hospice & Palliative Medicine, June 2015  32(4):427-36

Moestrup L;  Hansen HP.

Research suggests that addressing dying patients' existential concerns can improve their quality of life. Here, the authors aimed to illuminate dying patients' existential concerns about the impending death through a descriptive analysis of semi-structured interviews with 17 patients in Danish hospices. The main findings demonstrated how the patients faced the imminent death without being anxious of death but sorrowful about leaving life.

Verbalized desire for death or euthanasia in advanced cancer patients receiving palliative care

Palliative & Supportive Care, April 2015, 13(2):295-303

Guell E;  Ramos A;  Zertuche T;  Pascual A.

The authors found that although the single most common reason for a desire for death or desire for euthansia comment was pain or physical suffering, most of the reasons given were nonphysical.   They conclude that emotional and spiritual issues should be identified and effectively addressed when responding to a desire for death statement in terminally ill cancer patients.

Fulltext available in Palliative & Supportive Care

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Care of the human spirit and the role of dignity therapy: a systematic review of dignity therapy research

BMC palliative care, Jan 2015, vol. 14, p. 8

Fitchett, George, Emanuel, Linda, Handzo, George, Boyken, Lara, Wilkie, Diana J

Dignity Therapy (DT), an intervention for people facing serious illness, focuses on dignity conservation tasks such as settling relationships, sharing words of love, and preparing a legacy document for loved ones. The authors found that although patients reported high levels of satisfaction and benefits for themselves and their families, the effects on physical and emotional symptoms were inconsistent.  They point to three areas for future research on DT.

Desire for hastened death: exploring the emotions and the ethics

Current Opinion in Supportive & Palliative Care, March 2015, vol./is. 9/1(64-71)

Branigan M

Studies confirm that DHD is not always a request to die. Clarifying the intention behind the desire and exploring the individual factors and underlying reasons behind the wish have been described. We have a professional responsibility to mindfully explore with the patient the suffering that can be relieved and the suffering that remains.

Full text available in Current Opinion in Supportive and Palliative Care

Using Skype to facilitate presence at the end of life

Journal of Hospice and Palliative Nursing, Dec 2014, vol. 16, no. 8, p. 489-494

Flanagan, Jane, DeSanto-Madeya, Susan, Simms, Benjamin

The authors report on the use of Skype to allow family members who would not have otherwise been able to be present at the bedside during the dying process to actively participate in the experience. For the two families involved, the utilization of Skype at the bedside facilitated a sense of closure around the dying experience.

Identification and validation of premortem purge: a delphi study

Journal of Hospice and Palliative Nursing, Oct 2014, vol/iss 16/7 (430-437)

Schreiber, Tanya P., Bennett, Marsha J.

Anecdotal accounts offered by nurses suggest that some individuals in the final phase of dying experience a sudden, unexpected surge of energy and enhanced mental clarity, varying in intensity and duration. The Delphi method was used to systematically collect observations, opinions, and perceptions of the phenomenon, labeled premortem surge (PS).

Integrative review of dignity in end-of-life care

Palliative Medicine, July 2014, vol./is. 28/7(931-940)

Guo Q., Jacelon C.S

The aim of this review was to synthesize the meaning of dying with dignity and to identify common aspects of dignity in end-of-life care. 

Full text available in Palliative Medicine

Available in print in Arthur Rank House Library, Brookfields Hospital

Exploring hope and healing in patients living with advanced non-small cell lung cancer

Oncology Nursing Forum, 01 September 2014, vol./is. 41/5(497-508)

Eustache, Chloe, Jibb, Emily, Grossman, Mary

The authors used an interpretive qualitative study design involving 12 patients. Four main themes were identified: (a) the morass of shattered hope, (b) tentative steps toward a new hope paradigm, (c) reframing hope within the context of a life-threatening illness, and (d) strengthening the link between hope and wellness. They highlight the importance of understanding the fluctuating nature of hope in patients with advanced lung cancer to foster it, therefore promoting healing.

Available in print in Arthur Rank House Library, Brookfields Hospital