John Ellershaw

Care of the dying patient: the last hours or days of life

Evidence based guidelines on symptom control, psychological support, and bereavement are available to facilitate a “good death”

Care of the dying : a pathway to excellence

Introduction 1. What about Care Pathways? 2. What is the Liverpool Care Pathway for the dying patient (LCP)? 3. Symptom control in care of the dying: how can the Liverpool Care Pathway (LCP) influence symptom control?, How do you manage nausea and vomiting in the dying patient? and Comfort measures in the last hours or days of life 4. Ethical issues in care of the dying 5. Communication in care of the dying 6. Spiritual/religious issues in care of the dying 7. Supporting family and friends as death approaches and afterwards 8. Supporting children as death approaches and afterwards 9. Induction and implementation of the Liverpool Care Pathway for the dying patient (LCP) 10. Dissemination and sustainability strategy for the LCP programme - incorporating a model for national audit for care of the dying 11. International development of the LCP Appendix 1 - The Liverpool Care Pathway for the Dying Patient (LCP) Core Documentation Appendix 2 - Ongoing assessment of the plan of care Appendix 3 - Completed pathway Appendix 4 - Coping with dying leaflet

Care of the dying patient: the last hours or days of lifeCommentary: a “good death” is possible in the NHS

Evidence based guidelines on symptom control, psychological support, and bereavement are available to facilitate a “good death”

Euthanasia and physician-assisted suicide: a view from an EAPC Ethics Task Force

In 1991, a debate at the European Parliament on euthanasia stimulated discussion at all levels in Europe. Subsequently, the Board of Directors of the EAPC organised a working session together with two experts to help them clarify the position the organisation should adopt towards euthanasia. The experts collaborated with the Board of Directors on a document and in 1994 the EAPC produced a first statement, Regarding euthanasia, published in the official journal of the EAPC – the European Journal of Palliative Care . In February 2001, the EAPC Board asked an expert group to form an Ethics Task Force to review the subject and advise the organisation accordingly.

Dehydration and the dying patient.

This study investigated the relationship between symptoms and dehydration in 82 subjects with malignant disease. Assessment of respiratory tract secretions, thirst, and dry mouth were made during the dying phase, and serum biochemistry was analyzed. Follow-up data were also collected when the patient died. The median time from entry into the study until death was 2 days. All subjects died without artificial fluid therapy. Analysis showed that over 50% of subjects had a serum osmolality of less than 295 mOsm/kg. Contrary to previous anecdotal evidence, no statistically significant relationship was demonstrated between the level of hydration and respiratory tract secretions. Twenty-eight percent of subjects were able to respond to questions; 87% of these had a dry mouth and 83% felt thirsty. No statistically significant association was found between level of hydration and these symptoms. Artificial hydration to alleviate these symptoms in the dying patient may, therefore, be futile. Further work needs to be carried out regarding the cause and treatment of these symptoms in the dying patient.

Care of the Dying: Setting Standards for Symptom Control in the Last 48 Hours of Life

The hospice model of care of the dying patient is regarded as a model of excellence; however, outcomes of this care have been poorly demonstrated. Integrated Care Pathways (ICPs) provide a method of recording and measuring outcomes of care. The ICP document replaces all previous documentation and is a multiprofessional record of patient care. The aim of this study was to implement an ICP in an inpatient hospice setting in order to set standards of care for symptom control in the dying phase of a patients life. ICPs were analyzed from 168 inpatients who died over a one-year period. Symptoms of pain, agitation, and respiratory tract secretions (RTS) were monitored every four hours by nursing staff as either present or absent. For each symptom, 80% of patients had one episode or complete control of the symptom, 10% had two episodes, and 10% had three episodes or more recorded. As death neared, there was a statistically significant increase in the number of patients whose pain was controlled. The ICP has provided a means to measure symptom control in the dying patient and set standards of care, which is integrated into clinical practice.

Symptom management for the adult patient dying with advanced chronic kidney disease: A review of the literature and development of evidence-based guidelines by a United Kingdom Expert Consensus Group

Abstract Improvement in end-of-life-care is required for patients dying with chronic kidney disease (CKD). The UK government now recommends that tools such as the Liverpool Care Pathway for the Dying Patient (LCP) be used to enhance the care of those patients dying with CKD. The LCP was originally developed for patients dying with terminal cancer, however has been shown to be transferable to patients dying with heart failure or stroke. On this background, in 2005 a UK National Renal LCP Steering Group was formed. The aim was to determine whether or not the generic LCP was transferable to patients dying with CKD. An Expert Consensus sub-group was established to produce evidence-based prescribing guidelines to allow safe and effective symptom control for patients dying with renal failure. These guidelines were finalised by the Expert Consensus group in August 2007 and endorsed by the Department of Health in March 2008. A literature search on symptom control and end-of-life care in renal failure was performed. A summary of the evidence was presented at a National Steering Group meeting. Opinions were given and provisional guidelines discussed. A first draft was produced and individually reviewed by all members of the Expert Group. Following review, amendments were made and a second draft written. This was presented to the entire National Steering Group and again individual comments were taken into consideration. A third and fourth draft were written and individually reviewed, before the guidelines were finalised by the Expert Consensus group. Patients dying with advanced CKD suffer symptoms similar to patients dying of cancer. The Renal LCP prescribing guidelines aim to control the same symptoms as the generic LCP: pain, dyspnoea, terminal restlessness and agitation, nausea and respiratory tract secretions. The evidence for the production of the guidelines is discussed and how a consensus was reached. A summary of the guidelines is given and the complete guidelines document is available via the Marie Curie Palliative Care Institute, Liverpool website.

Artificial nutrition and hydration in the last week of life in cancer patients. A systematic literature review of practices and effects

BACKGROUND The benefits and burdens of artificial nutrition (AN) and artificial hydration (AH) in end-of-life care are unclear. We carried out a literature review on the use of AN and AH in the last days of life of cancer patients. MATERIALS AND METHODS We systematically searched for papers in PubMed, CINAHL, PsycInfo and EMBASE. All English papers published between January 1998 and July 2009 that contained data on frequencies or effects of AN or AH in cancer patients in the last days of life were included. RESULTS Reported percentages of patients receiving AN or AH in the last week of life varied from 3% to 53% and from 12% to 88%, respectively. Five studies reported on the effects of AH: two found positive effects (less chronic nausea, less physical dehydration signs), two found negative effects (more ascites, more intestinal drainage) and four found also no effects on terminal delirium, thirst, chronic nausea and fluid overload. No study reported on the sole effect of AN. CONCLUSIONS Providing AN or AH to cancer patients who are in the last week of life is a frequent practice. The effects on comfort, symptoms and length of survival seem limited. Further research will contribute to better understanding of this important topic in end-of-life care.

On withholding nutrition and hydration in the terminally ill: has palliative medicine gone too far? A reply.

Patients who are dying of cancer usually give up eating and then stop drinking. This raises ethical dilemmas about providing nutritional support and fluid replacement. The decision-making process should be based on a knowledge of the risks and benefits of giving or withholding treatments. There is no clear evidence that increased nutritional support or fluid therapy alters comfort, mental status or survival of patients who are dying. Rarely, subcutaneous fluid administration in the dying patient may be justified if the family remain distressed despite due consideration of the lack of medical benefit versus the risks. Some cancer patients who are not imminently dying become dehydrated from reversible conditions such as hypercalcaemia. This may mimic the effects of advanced cancer. These conditions should be sought and fluid replacement therapy should be given along with the specific treatments for the condition.

Euthanasia and physician-assisted suicide: A white paper from the European Association for Palliative Care

Background: In recognition of the ongoing discussion on euthanasia and physician-assisted suicide, the Board of Directors of the European Association for Palliative Care commissioned this white paper from the palliative care perspective. Aim: This white paper aims to provide an ethical framework for palliative care professionals on euthanasia and physician-assisted suicide. It also aims to provide an overview on the available evidence as well as a discourse of ethical principles related to these issues. Design: Starting from a 2003 European Association for Palliative Care position paper, 21 statements were drafted and submitted to a five-round Delphi process Participants: A panel with 17 experts commented on the paper in round 1. Board members of national palliative care or hospice associations that are collective members of European Association for Palliative Care were invited to an online survey in rounds 2 and 3. The expert panel and the European Association for Palliative Care board members participated in rounds 4 and 5. This final version was adopted as an official position paper of the European Association for Palliative Care in April 2015. Results: Main topics of the white paper are concepts and definitions of palliative care, its values and philosophy, euthanasia and physician-assisted suicide, key issues on the patient and the organizational level. The consensus process confirmed the 2003 European Association for Palliative Care white paper and its position on the relationship between palliative care and euthanasia and physician-assisted suicide. Conclusion: The European Association for Palliative Care feels that it is important to contribute to informed public debates on these issues. Complete consensus seems to be unachievable due to incompatible normative frameworks that clash.