In the Midst of Life

Books

Palliative Care Resuscitation by Madeline Bass (2006) Published by John Wiley and Sons. A guide for professionals, patients and families alike on the ethical and legal issues relating to resuscitation when someone has an incurable illness.

Person to Person: Guide to the Care of Those with Failing Mental Powers by Tom Kitwood and Kathleen Bredin (1992): very good guide but not up to date, as it was written before the Mental Capacity Act came into force in 2007. Published by Gale Centre Publications.

Dementia Care Training Manual for Staff Working in Nursing and Residential Settings by Danny Walsh (2006). Published by Jessica Kingsley Publishers.

How We Die by Sherwin B Nuland (1993). Published by Chatto & Windus/Vintage Books.

Staring at the Sun: Overcoming the Terror of Death by Irvin Yalom (2008). Published by Piatkus Books.

How to Have a Good Death by J Ellershaw, et al, ed D Beckerman (based on the BBC documentary by Esther Rantzen). Published by Dorling Kindersley

Caring for Someone With a Long-Term Illness by J Costello (2009). Published by Manchester University Press.

Caring for Dying People of Different Faiths by Julia Neuberger. Published by Radcliffe Publishing Ltd.

Dying Well: A Guide to Enabling a Good Death by Julia Neuberger (2004). Published by Radcliffe Publishing Ltd.

On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss by Elisabeth Kubler-Ross & David Kessler (2005). Published by Simon & Schuster.

On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families by Elisabeth Kubler-Ross (introduction by Allan Kellehear) (2009). Published by Rout-ledge.

Oral Feeding Difficulties and Dilemmas: a guide to practical care, particularly towards the end of life. A report of the working party under the chairmanship of Dr Rodney Burnham (2010). Published by the Royal College of Physicians, together with the British Society of Gastroenterology.

Other books and journal articles: although a long list, this will be particularly useful for health and social care professionals.

Ballinger, D. Is it ever acceptable to deceive a patient? Nursing Times (1997); 93 (35) 44-45.

Bass, M. Oncology nurses’ perceptions of their goals in the resuscitation status of oncology patients. Professional Nurse (2003); 18 (12), 710-713.

Bass, M. Resuscitation: knowing whether it is right or wrong. European Journal of Palliative Care (2008); 15 (4) 175—178.

Bass, M. Should patients who are at the end of life be offered resuscitation? Nursing Times (2009); 105 (3) 19.

Bass, M. CPR decisions in palliative care should allow for a good death. Nursing Times (2009); 105 (15) 11.

Bass, M. Advance Care Planning for the end of life. Oncology and Palliative Care (2009); 3 (2) 42—43.

Billings, J A. Comfort measures for the terminally ill: is dehydration painful? Journal of the American Geriatric Society (1985); 33: 808-810.

Birtwhistle, J, Nielson, A. Do not resuscitate: an ethical dilemma for the decision-maker. British Journal of Nursing (1998); 7 (9) 543-549.

British Medical Association. Withholding and Withdrawing Life-prolonging Treatments: Good Practice in Decision-making (2002); BMA, London. Available to download from: www.gmc-uk.org.

British Medical Association, Royal College of Nursing, and Resuscitation Council (UK) Decisions relating to cardio-pulmonary resuscitation. A joint statement from the BMA, RCN and RC (2001). www.resus.org.uk.

Burge, F. Dehydration symptoms of palliative care patients. Journal of Pain and Symptom Management (1993); 8: 454—64.

Clark, D. Between hope and acceptance: the medicalisation of dying. British Medical Journal (2002); 324, 905—907.

Conroy S P., Luxton, T., Dingwall, R., Harwood, R H., Gladman, J R F., Cardiopulmonary resuscitation in continuing care settings: time for a rethink? British Medical Journal (February 2006); 332: 47-482.

Cooley C. Communication skills in palliative care. Professional Nurse (2000); 15 (9) 603-605.

Craig, G M. On withholding nutrition and hydration in the terminally ill: has palliative medicine gone too far? Journal of Medical Ethics (1994): 20: 1339-143.

Dallain, L. Cardiopulmonary resuscitation in the hospice setting. Cancer Nursing Practice (2004); 3 (9) 35—39.

Dean, J A. The resuscitation status of a patient: a constant dilemma. British Journal of Nursing (2001); 10 (8) 537—543.

Diem, SJ et al. Cardiopulmonary resuscitation on television. New England Journal of Medicine (1996); 334 (24) 1758—1582. Dimond, B. Not for resuscitation instructions: the law for adult patients in the UK. British Journal of Nursing (2004); 13 (16) 984-986.

Ebrahim, S. DNR decisions: flogging dead horses or a dignified death? British Medical Journal (2000); 320 (7243) 1155—6.

Ellershaw, J E, Sutcliffe, J M, Saunders, C M. Dehydration and the dying patient. Journal of Pain and Symptom Management (1995); 10 (3) 192-197.

Ewer, M S, Kish, S K, Martin, C G, Price, K J, Feeley T W.

Characteristics of cardiac arrest in cancer patients as a predictor after CPR. Cancer (2001); 92: 1905—12.

Field, D. Palliative medicine and the medicalisation of death. European Journal of Cancer Care (1994); 3, 58—62.

Firth, S. Wider horizons: care of the dying in a multicultural society. (2001) National Council for Palliative Care, London.

Fleming, K. The meaning of hope to palliative care cancer patients. International Journal ofPalliative Nursing (1997); 3 (1) 14—18.

George, A L, Folk, B P, Crecilius, P L, Campbell, P L. Pre-arrest morbidity and other correlates of survival after in-hospital CPR.

American Journal of Medicine (1989); 87: 28—34. Goss, R. (Letters) Do not resuscitate orders: without discussion these orders are unethical at any age. British MedicalJournal (2001); 322 (7278), 105.

Hayward, M. Cardiopulmonary resuscitation: are practitioners being realistic? British Journal of Nursing (1999); 8 (12) 810—814.

Herth, K. Fostering hope in terminally ill people. Journal of Advanced Nursing (1990); 15: 1250—1259.

Jevon, P. Do not resuscitate orders: the issues. Nursing Standard (1999); 13 (40) 45-6.

Kouwenhoven, W B, Knickerbocker, G G, Jude, M D, James, R. Closed chest cardiac massage. Journal of the American Medical Association (i960); 173 (10) 1064-1067.

Low, J S; Payne, S. The good and bad death perceptions of health professionals working in palliative care. European Journal of Cancer Care (1996); 5, 237-241.

McNeil, C. A good death (editorial). Journal of Palliative Care (1998); 14: 1; 5-6.

Mayo, T W. Forgoing artificial nutrition and hydration: legal and ethical considerations. Nutrition in Clinical Practice (1996); 11: 254-264.

National Council for Palliative Care. Ethical decision-making in palliative care: artificial hydration for people who are terminally ill. (2002) NCPC, London.

National Council for Palliative Care. CPR: Policies in action: proceedings of a seminar to inform best practice with CPR policies within palliative care. (2003) NCPC, London.

Regnard, C, Mannix, K. Reduced hydration and feeding in advanced disease - a flow diagram. Palliative Medicine (1991); 5: 161-164.

Rousseau, P. Ethical and legal issues in palliative care. Palliative Care (2001); 28 (2) 391-399.

Safar, P. On the history of modern resuscitation. Critical Care Medicine (1996); Feb, 24 (2 supplement) S3—11.

Sweet, S J, Norman, I J. The nurse—doctor relationship: a selective literature review. Journal of Advanced Nursing (1995); 22: 240—1.

Thomas, A. Patient autonomy and cancer treatment decisions. International Journal of Palliative Medicine (1997); 3 (6) 317—323.

Tschudin, V Ethics in Nursing (2nd Edition) (1992). Oxford: But-terworth-Heinemann.

Vitelli, C; Cooper, K; Rogatko, A; Brennan, M (1991) Cardiopulmonary resuscitation and the patient with cancer. Journal of Clinical Oncology 9(1) 111—115.

Willard, C. The nurse’s role as patient advocate: obligation or imposition? Journal of Advanced Nursing (1996); 24, 60—66.

Willard, C. Cardiopulmonary resuscitation for palliative care patients: a discussion of ethical issues. Palliative Medicine (2000); 14: 308-312.

Woodrow, P. Nurse advocacy: is it in the patient’s best interests?

British Journal of Nursing (1997); 6 (4) 225—229.

Younger, S J. Who defines futility? Journal of the American Medical Association (1988); 260: 2094-5.

Websites

Dementia, from NHS Choices website. Information about the disease and a short video about living with dementia. http://www.nhs.uk/conditions/dementia/Pages/lntroduction.aspx

Alzheimer’s Society website: information about the different types of dementia and where to access help. http://alzheimers.org.uk/site/scripts/home_info.phpPhomepagelD=29

Also information available from BBC Health website: http://www.bbc.co.uk/health/conditions/mental_health/disorders_dementia.shtml

British Society of Psychiatrists has a useful leaflet online: http://www.rcpsych.ac.uk/default.aspx?page=1427

Cancer Research UK website: information about different types of cancer and about present research projects: http://www.cancerresearchuk.org/

Macmillan Cancer Support website has a multitude of information about cancer, treatments, and cancer survivorship. http://www.macmillan.orguk/Home.aspx

For professionals: Macmillan has a very informative ‘learn zone’ website which can be accessed following this link. It’s free, but you need to register to use it. http://learnzone.macmillan.org.uk/

To find your local hospice visit: http://www.helpthehospices.org.uk/about-hospice-care/find-a-hospice/uk-hospice-and-palliative-care-services/ By typing in your postcode you can access the contact details for your closest hospice.

Health talk online: Set up by the DIPEx charity, this is a very useful website both for the public and professionals, using real-life people to talk about their own stories. Some of these are to do with having a terminal illness, personal experiences of chronic illness and also mental health: http://www.healthtalkonline.org/

MND Association: helpful website for anyone living with motor neurone disease: http://www.mndassociation.org/

Heart failure: NHS Choices website: http://www.nhs.uk/conditions/heart-failure/Pages/Introduction.aspx

Chronic kidney Failure: UK National Kidney Federation http://www.kidney.org.uk/Medical-Info/ckd-info/

The National Council for Palliative Care is a national organisation which supports people with terminal illness and professionals: http://www.ncpc.org.uk

NHS Choices: information for anyone with a palliative illness. Includes a link to the Carers Direct helpline, and information on some possible grants to help with the financial costs of caring http://www.nhs.uk/CarersDirect/guide/bereavement/Pages/ Grants

Marie Curie offer free support to people who want to die in their own home: http://www.mariecurie.org.uk/

Useful in finding out more information about recording your own, or your patients’, wishes. http://www.adrtnhs.co.uk/

Direct.gov is a useful website for lots of different things, the mental Capacity Act being one of them: http://www.direct.gov.uk/en/DisahledPeople/HealthAndSupport/YourRightsInHealth/DG_10016888

The Department of Justice now governs this, but information can be found from the Department of Constitutional affairs, an archive website. This link will take you to the list of booklets available for professionals and the public: http://www.dca.gov.uk/legal-policy/mental-capacity/publications.htm#booklets

Information about patient selection, and complications: http://www.patient.co.uk/doctor/Enteral-Feeding.htm

For people with cancer, this site gives information on what enteral feeding is all about: http://www.cancerhelp.org.uk/coping-with-cancer/coping-physically/diet/managing/drip-or-tube-feeding

The Resuscitation Council (UK) guidance, which has been written with the British Medical Association and the Royal College of Nursing: http://www.resus.org.uk/pages/dnarrstd.htm

Financial support if caring for someone with a terminal illness, available at Direct.gov: http://www.direct.gov.uk/en/CaringForSomeone/ CaringAndSupportServices/DG_10035718

If I should Die: a very informative website covering lots of different subjects, such as funeral plans, benefits and how to comfort those who are grieving: http://www.ifishoulddie.co.uk/terminal-life-threatening-illness-c40.html

A website for family carers which offers help and advice for anyone caring for someone with a long-term or terminal illness: http://www.carers.org/