In the Midst of Life
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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
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
B
ritish Society of Psychiatrists has a useful leaflet online: http://www.rcpsych.ac.uk/default.aspx?page=1427
Cancer
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/
Hospice care
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.
Palliative care
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/
Advance decisions to refuse treatment
Useful in finding out more information about recording your own, or your patients’, wishes. http://www.adrtnhs.co.uk/
The Mental Capacity Act
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
Enteral/artificial feeding
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
Do Not Attempt Resuscitation
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
For anyone living with, or caring for someone with, a long-term illness, or terminal illness
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/
GLOSSARY
by Madeline Bass, RGN, BSC (Hons)
Abdominal exploration: a surgical investigation through an incision, or through key-hole surgery using cameras.
Abdominal sounds: the normal sounds produced by movement of the bowel and gut.
Acetylcholine: a neuro-transmitter. This is a substance which the body produces at the end of each nerve cell which then stimulates the next nerve cell to continue the message.
Acidosis: increased acid levels in the blood which is caused by partial or complete renal failure.
Acute intestinal obstruction: This is when the gut suddenly blocks either internally, such as from a tumour or the gut twisting, or externally such as from a tumour pressing on to the gut.
Adrenaline: a substance produced by the body in times of threat or stress. One of its actions is to speed up the heart rate. If the heart stops unexpectedly, adrenaline is one of the drugs used to try and stimulate it to begin working again.
Advance Directive: now called Advance Decision: These are now legally recognised documents, with specific wording, which refuses treatment in specific circumstances, witnessed. They have to be written whilst the person still has mental capacity and can only come into effect when the person loses that capacity. They must be signed and witnessed to become legal. If overruled by a healthcare professional they could face charges of neglect or assault.
Amyotrophic Lateral Sclerosis (AMS): a form of Motor Neurone Disease (MND): MND affects the nerves which control functions of the body, and is always fatal.
Analgesic: a medication or drug which reduces the feeling of pain.
Aneurysm: a blood-filled swelling of the wall of an artery.
Angina pectoris: lack of oxygen to the heart muscles, which causes pain in the chest and breathlessness.
Anodyne: an analgesic which works by lessening the sensitivity of the nerves or brain.
Anorexia: not to be confused with anorexia nervosa, this refers to lack of appetite.
Anti-coagulants: a wide-ranging group of drugs to dissolve and prevent blood clots forming inside the blood vessels.
Anti-emetics: drugs which suppress nausea and vomiting.
Aperients: oral drugs used to stimulate the bowels.
Arteries: blood vessels which carry oxygenated blood.
Arterioles: the smallest arteries in the body.
Ascites: build-up of fluid in the abdominal cavity.
Asphyxia: suffocation, dying through lack of oxygen.
Aspirating needle: a needle used to remove fluid from a part of the body.
Aspiration: being wrongly taken into the lungs, e.g. food entering the lungs. Aspiration will lead to pneumonia if not prevented and treated.
Atheroma of the arterial circulation: swelling of the walls of the arteries, caused by debris such as fats, cholesterol, calcium and connective tissue.
Atrial response: action of the atria, the two smaller chambers of the heart. The right atrium pushes blood into the right ventricle, where blood is then pushed to the lungs to collect oxygen. From there it returns to the left atrium which pumps it into the left ventricle. From there it is pushed via the aorta around the body.
Auscultations: examination by listening.
Bedsores: also called pressures sores: these occur when the body does not move around enough, e.g. due to accident, illness, disability or injury. This causes the person to be less mobile. If pressure is applied to an area of the body for too long the circulation is compromised and the skin starts to break down, causing a sore.
Bladder irrigation: certain conditions can cause a blockage of the urethra, e.g. in prostatectomy, bleeding is prevented from blocking the urethra by passing a large catheter, which has two drainage lines, into the bladder: one allows sterile saline to be flushed into the bladder, and the other allows the saline and bladder contents to drain out.
Blood count: a general term referring to the counts of different elements of the blood, such as red blood cells, urea or potassium. BMA: British Medical Association.
Brompton cocktail:
a concoction of many different types of drugs often given to terminally ill patients to alleviate pain.
Bronchitis: inflammation of the bronchi, the smallest breathing passages in the lungs.
Cannula: a very thin tube, thinner than a catheter, which can be inserted into the body, e.g. into a vein.
Carcinogenic: something which causes cancer, e.g. tar in cigarettes is a known carcinogenic.
Cardiac stimulants: drugs which stimulate the heart to work correctly.
Cardiologist: a medical specialist in conditions and problems with the heart.
Cardio-pulmonary: pertaining to the heart and lungs.
Cardiovascular: pertaining to the heart and circulation system.
Carotid beat: the pulse felt from the carotid artery, in the neck.
Catheterise: to place a catheter, which is a small tube, into the body, e.g. a bladder catheter to help drain urine, a kidney catheter to help drain urine directly from the kidneys.
Central line: a small tube inserted into the one of the large veins leading to the heart. Drugs can be administered into this, and blood samples taken from it.
Cerebral arteries: the arteries in the brain.
Chemotherapy: strong poisons used to destroy fast-dividing cells. Since cancer cells normally grow much more quickly than normal cells, chemotherapy may effectively kill them. However some chemotherapy cannot discern between the cancer’s fast-dividing cells and normal fast-dividing cells, e.g. gut cells, hair cells. This is why some chemotherapy causes nausea, mouth ulcers, diarrhoea and hair loss. These drugs are dose-limiting: i.e. a person can only have so much of a certain drug at a time.
Cholera: gastroenteritis caused by bacteria. It results in severe diarrhoea. The disease can progress very quickly resulting in shock within twelve hours from severe dehydration. It is extremely contagious.
Clot-buster: a drug to dissolve any clots which have formed in the blood vessels.
Colitis: inflammation of the colon, the large bowel.