FURTHER READING AND INFORMATION

 

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  

 

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  

 

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.

Colostomy: when the bowel is surgically attached to the skin so that faeces are excreted into a bag which can then be emptied.

Congestive heart failure: heart failure is when the heart, which is a large muscle, begins to enlarge and get weaker through age or disease. This means it has to work harder to maintain normal heart function. The disease can be controlled at times by certain drugs.

Coronary arteries: the arteries of the heart. There are four arteries which supply the heart muscle with oxygen. Coronary failure: another term for heart failure. CPR: short for cardio-pulmonary resuscitation: the full term for resuscitation.

Craniotomy: removal of part of the skull bone during a surgical procedure to the brain.

Cross-matching: this is a process which is carried out to make sure the person is given the right type of blood during a blood transfusion.

Cyanosis: lack of oxygen in the body’s tissues leading to a blue colour in extremities.

Defensive medicine: medicine and treatment carried out to prevent complaints and safeguard against malpractice.

Defibrillator: a machine which delivers electric shocks to the heart, to try and reverse fibrillation of the heart muscle.

Dementia: a disease which causes the brain to begin to degenerate. There are over two hundred different types of dementia, the most common being Alzheimer’s. The disease is not curable.

Dialyse: pertaining to kidney dialysis, a process where the blood is mechanically filtered because the kidneys are unable to perform this function.

Diuretics: drugs which increase the drainage of urine out of the kidneys, often used to reduce blood volume, e.g. in high blood pressure and heart failure.

Draining filaments: a drain where the end is frayed out into filaments: used to drain wounds or wound cavities.

Duodenal ulcer: an area of the duodenum, which becomes very sore and excoriated. This can cause pain, indigestion and nausea.

Duodenum: first part of the small bowel leading away from the stomach.

Electrolyte balance: electrolytes are substances produced by the body which maintain healthy functioning. Certain electrolytes include potassium and sodium. If the levels become abnormal such as in kidney dysfunction many of the body’s otherwise normal functions may go wrong.

Embolism / embolus / emboli: an object migrating from one part of the body to another which occludes a blood vessel, e.g. blood clot.

Encapsulated: a growth confined to a specific, localised area.

Endogenous clinical depression: depression that people are born with. It is thought it may be genetic.

Endomorphs: endorphins, the body’s natural morphine-like substances which give the ‘feel good’ factor.

Endotracheal tube: a tube placed into the lungs via the mouth and throat. It may be used during surgery to help a person breathe. It is usually temporary.

Epiglottis: a cartilaginous flap of skin which lies between the trachea and the gullet. When swallowing food, saliva or fluid, the epiglottis closes over the trachea to prevent food going in to the lungs.

Erythrocyte sedimentation rates: the rate at which red blood cells precipitate within an hour. ESR is a general test indicating the presence of inflammation within the body.

Excoriated: when skin becomes raw, sore, and the top layers are removed.

Exudate: a fluid that filters from the circulatory system into lesions or areas of inflammation.

Feed-pegs: or peg tubes: tubes inserted directly into the stomach through the skin which can allow liquid feed to be given to the patient. Useful when patients lose the ability to swallow such as after a stroke.

Fehlings solution: used to detect sugar in the urine.

Fibrillating: when the heart muscle is rapidly twitching in an uncoordinated way.

Flavine gauze: gauze soaked in flavine, an antiseptic.

Gastrectomy or gastric resection: this is when part or the whole of the stomach is removed.

Gastric intubation and suction: A tube inserted through the person’s nose into their stomach (called a naso-gastric tube) which can then be used to drain the fluids away more comfortably and cleanly. A syringe can be attached to the tube and used to remove the stomach’s contents by ‘suction’.

Gastro-enterologist: a specialist in the gastro-intestinal tract, digestion and its disorders.

Glucose and saline infusion: (see ‘infusion’ as well) an infusion into the vein of a mix of weak saline (salt) and glucose (sugar) solution.

Glyceryl trinitrate: a drug used to treat angina.

Glycosuria: the excretion of glucose into the urine.

Haemoglobin levels: haemoglobin is a protein in red blood cells which carries oxygen.

Hallucinogenic: substances causing hallucinations.

Hardened arteries: arteries are normally elastic to cope with the pressure of blood being pushed around the body: this elasticity allows the arteries to maintain the blood pressure.

Hemiplegic: one-sided weakness of the body.

Hiatus hernia: caused by the upper part of the stomach pushing through the hole in the diaphragm.

Hippocratic Oath: historically, an oath taken by doctors to practise ethically in medicine. It has been taken over by another oath in the USA. In the UK it has been taken over by a different code of conduct.

Huntingdon’s chorea: a degenerative disease of the brain, whereby the person suffers physical, cognitive and functional effects. It is hereditary and always fatal.

Hydraulic air bed: a specialised bed used to prevent pressure and bedsores in someone with reduced mobility.

Hypoglycaemia: low blood sugar levels. Can occur in diabetics when they do not take in enough glucose from their diet.

Hyper-glycaemia is high blood sugar levels, again caused by diabetes. Symptoms build up over several days but if not treated it can affect vision, nerves and circulation.

Hypothalamus: a very small part of the brain, which controls temperature, hunger, thirst and circadian rhythms (the twenty-four-hour body clock).

Iliac crest: part of the pelvic bone.

Iliac vein: main veins of the pelvis.

Infarction: the process of tissue death caused by lack of circulation to the area.

Involuntary reflexes: these are the body’s responses to certain things and which cannot be controlled by the mind.

Irritable bowel: a disease in which the bowel becomes irritated by something, either an allergy, disease or drugs, which causes profuse diarrhoea or constipation.

Ischaemic heart disease: death of heart tissue caused by blockage of blood vessels.

IV’s: short for intravenous, a term used for anything given via a vein.

Jugular: the largest vein in the body, situated in the neck.

Ketones: a by-product of the breakdown of fatty tissue in the body, usually occurring in diabetics.

Lapatoromy: This is the name of the surgical incision to the abdomen.

Laying out: often called ‘Last Offices’. This is the process of preparing the body of someone who has just died for burial.

Leukaemia: Cancer of the bone marrow.

Lasting Power of Attorney (LPA) - Health and Welfare: the only legally recognised way a person can make a medical decision on behalf of another. This power only comes into effect when the person loses capacity i.e. the ability to make a decision. It must be registered (proven by a hologram sticker on the document, and an official rubber stamp) and must be seen by the medics and people treating that person at the time. The person acting as the attorney can only make decisions within the remit of what they think the person they are representing would have wanted in that situation.

Lumbar puncture: an investigative procedure in which cerebrospinal fluid is removed for analysis.

Mastectomy: removal of all or part of the breast.

Mersalyl: an early diuretic which contained mercury.

Metastasis: a single site where the cancer has spread, a single secondary. Metastases is the plural and means multiple secondaries.

MRSA: Methicillin-Resistant Staphylococcus Aureus: a highly contagious and resistant bacterial infection requiring strong skin cleansers, and antibiotics.

Multiple sclerosis: when the myelin sheath (insulation) around certain nerves is affected which slows down the passage of nerve messages. There are several types of MS, some more progressive and damaging than others.

Nasojejunostomy tube: tube that is inserted through the nasal passage, into the gullet, through the stomach and into the small bowel, the jejunum.

Necrotic: dead and decaying: e.g. necrotic skin is blackened skin caused by lack of circulation.

Neurodegenerative disease: disease which causes deterioration of the nervous systems.

Neurologist: a specialist of the nerves, the nervous system and related disorders.

Oedema: swelling of the tissues of the body caused by poor circulation.

Oestrogen / Progesterone: these are female steroids, better known as female sex hormones.

Oncologist: a doctor specialising in treating cancer.

Oncotic pressures: when blood is more concentrated and attracts water into the circulatory system.

Open heart resuscitation (direct manual compression): heart compressions applied directly to the heart through an incision made through the skin, sternum and membranes.

Palliative care: care of patients with incurable disease and their families. In chronic disease it will begin when the disease can no longer be assisted by drug therapy.

Paraldehyde: a substance originally used to control convulsions, and as a sedative and hypnotic.

Paralytic ileus: when the small bowel paralyses itself.

Paramedics: specially trained professionals who attend emergencies in the community.

Parenteral: given via external route instead of via the gastrointestinal route.

Path lab analysis (short for pathology laboratory analysis): analysis of certain body tissues or fluids.

Pathologist: a specialist of pathology.

Pelvic colon: the colon is the large bowel.

Peripheral: on the edges of the body.

Peritoneal cavity: the abdominal cavity, which is surrounded by the peritoneal membrane.

Peritonitis: inflammation of the peritoneum, the membrane lining the abdominal cavity. It can be caused by infection, disease or injury. It needs to be treated with strong antibiotics or an operation, and can be fatal.

Placebo: a substance with no active element or drug, often used in trials against a real drug to see whether the latter is more effective.

Plaques: in Alzheimer’s dementia, small clumps of proteins that grow around brain cells and prevent normal functioning.

Pleural aspiration: drainage of fluid, which has built up between the pleural membranes surrounding the lungs.

Pneumococcal organisms: the bacterial cause of pneumonia.

There is now a vaccination to protect people from this.

Polyuria: excessive production and excretion of urine.

Positive pressure: when the pressure within a system is higher than that of the environment it is in.

Potassium citrate: a substance used to dilute acidic urine.

Primary progressive aphasia: when words are muddled and mixed up, and speech is then lost altogether.

Prostatectomy: surgical removal of the prostate gland.

Psycho-geriatric ward: now called Elderly Mentally Ill (EMI) wards. This is a ward specially designed to care for elderly people who have mental health problems.

Psychosomatic paralysis: paralysis caused by the unconscious mind.

Pulmonary oedema: fluid congestion in the lungs which may be caused by heart conditions.

Radiotherapy: treatment of cancer using radium.

Remedial therapy: treatment to aid recovery: it tends to be non-pharmacological in nature.

Respiratory drive: this is controlled by a part of the brain which measures how much carbon dioxide is present in the blood and controls how the person breathes.

Retractor: a surgical instrument which is used to hold back skin, muscle or bone to allow better access and vision during surgery.

Rheumatism: a condition of the joints and connective tissue.

Rigor mortis: after a certain period following death, the muscles of the body begin to stiffen.

Sarcoma: a cancer of connective tissue, i.e. bone, cartilage or muscle.

Sclera: the white part of the eyeball, which is made up of elastic fibrous tissue.

Septicaemia: infection in the blood.

Serum: the watery part of blood, which carries the red and white blood cells, and platelets.

Shock: bodily collapse or near collapse caused by inadequate delivery of oxygen to the cells from decreased heart functioning, e.g. from excessive loss of blood.

Sigmoid colon: this links the anus and rectum to the large bowel.

Sloughing: when part of the body becomes detached, usually linked with wounds and skin in humans.

Staphylococcal infection: a particular type of bacterial infection caused by the Staphylococcus bacterium.

Statins: a group of drugs used to reduce the blood cholesterol level.

Sternum: the bone that connects both sides of the rib cage at the front.

Stertorous: heavy mouth breathing, characterised by loud snoring or gasping noises.

Suppuration: the formation and production of pus.

Supra-pubic catheter: a tube placed directly into the bladder through the skin, just above the pubic bone.

Surgical shock: similar to normal shock, but caused by surgery.

Thrombosis: a blood clot occurring in a blood vessel.

Tibia and fibula: the two bones of the lower leg, between knee and ankle.

Titrated / titration: when a drug or treatment is given according to how much is needed by the patient before too many side effects, or intolerance, develops.

Total parenteral nutrition: complete nutritional diet given intravenously. It is mixed in sterile conditions according to the individual’s daily blood tests and contains all the calories, nutrients, vitamins and minerals a person needs.

Tracheostomy: a hole made in the throat wall into which a tube is placed into the bronchus, the main breathing tube into the lungs. A tracheostomy tube is placed in this man-made hole to keep it patent, e.g. a Durham’s tube.

Transient ischaemic attack (TIA): a small stroke with little or no long-term effects on the person. But a doctor should be seen urgently if one occurs because without treatment a major stroke could follow.

Trephining / trephine: when a burr hole is made through the skull, using a drill, as part of a surgical procedure.

Trocar and cannula: a cannula is a thin ‘needle’ structure often made of plastic which can be inserted into the body. The trocar is the introducer, a thin piece of stable metal, which assists its placement. The trocar is then removed.

Uraemia: high levels of urea on the blood.

Urethra: the tube that transports urine from the bladder during excretion.

Urinalysis: a simple test of the urine to look for any problems.

Urine drainage bag: used to collect urine drainage via a catheter.

Vascular dementia: dementia caused by lack of circulation of blood to various parts of the brain causing the death of those affected parts and therefore affecting mental functions.

Ventricle: the larger chambers of the heart.

Ventricular fibrillation: fibrillation of the ventricles, the two largest chambers of the heart.

Voluntary euthanasia: when someone’s life is actively ended with their agreement, and with the help of someone else using specific drugs.

Volvulus: a blockage of the bowel caused by it twisting in on itself.

Warfarin: a blood clot-dissolving drug which tends to be used prophylactically to prevent further blood clots forming.

White cell counts: white cells exist in the blood and fight infection. If a person is not producing enough white blood cells they will be immunocompromised.

 

ACKNOWLEDGEMENTS

 

My appreciation and gratitude to all the people who have helped me in writing this book.

My husband, Philip, whose love and loyalty, wisdom and humour have kept me sane throughout

Dr David Hackett, Dr Richard Lamerton, Dr Michael Boyes

Dr Robin Moffat, President of the Medico-Legal Society Susan McGann, Paul Vaughan and Susan Watt of the Royal College of Nursing

Louise Massen and Madeline Bass

Patricia Schooling, for her several readings and invaluable suggestions All those who have supported me in prayer, especially Sister Christine and the Community of St John the Divine, Birmingham; Sister Elizabeth and the Convent of Our Lady, Kettering; the Sisters of the Love of God, Oxford

The Chaplains of the Methodist Homes for the Aged, and St Francis Hospice for the Dying

Colin Rivett, Eve Griffin, Jeremy Buckman, Counsellors

Anna Powiecki, Eugenie Furniss and Claudia Webb at William Morris, Endeavour Entertainment, John Saunders, Kirsty Dunseath, Sophie Buchan and the team at Weidenfeld & Nicolson, Carole Lewis, Sue Theobald, Christoper Howe

David Hart, poet, priest and dreamer

Patricia Birch, Joanna Bruce, MBE; Sue, Jayne and Jane, my sister and nieces who are nurses and care assistants

Lydia Hart, Eleanor Hart

Shelagh and her family in Israel, and Steve and Sandy, Wendy and Philip.

— and the many people who have told me their stories but do not wish to be named.

Excerpt from Nurse on Call by Edith Cotterill, published by Ebury, Reproduced with permission of The Random House Group Ltd.

Excerpt from How We Die by Sherwin B Nuland, published by Chatto & Windus. Reproduced with permission of Random House Group Ltd.

Excerpt from ‘Do not go gentle into that good night’ by Dylan Thomas from Poems, published by JM Dent, a division of the Orion Publishing Group. Reproduced with permission from David Higham Associates.

Excerpt from Four Quartets by T.S. Eliot reproduced with permission of Faber.

Excerpt from Malone Dies by Samuel Beckett reproduced with permission of Faber.

Poems by David Hart reproduced with permission of the author and Five Seasons Press.

All efforts have been made to obtain permission for the use of the excerpt from Truman of St Helens by Shirley Rosen. Anyone with rights to this book is invited to contact the author.

1* from How We Die, Sherwin B Nuland, Alfred A. Knopf, New York, 1993

2* It is very difficult to remove a feed-peg because it is a life-maintaining device. It requires a major medical/legal decision and this is not easy to come by.

3** Ahronheim, J C, Morrison, R S, Baskin, S A, Morris, J, Meier, D E. Treatment of the dying in the acute care hospital. Advanced dementia and metastatic cancer. Archives of Internal Medicine, 1996; 156: 2094-100.

4* A joule is a unit of heat, energy and force – in this case electricity.

5* For an update, see Appendix I, Medical Aspects of Cardio-Pulmonary Resuscitation, by David Hackett, MD, FRCP, FESC.

6* From Shirley Rosen,‘ Truman of St Helens’, published by Madrona Publishers, Seattle, Washington State, 1981

7* Dylan Thomas, 1951.

8* The Resuscitation Council. http://www.resus.org.uk/SiteIndx.htm

9* The Resuscitation Council. http://www.resus.org.uk/pages/mediMain.htm

10* Gwinnutt C, Columb M, Harris R. Outcome after cardiac arrest in adults in UK hospitals: effect of the 1997 guidelines. Resuscitation 2000; 47: 125-135. http://www.resuscitationjournal.com/article/S0300-9572(00)00212-4/abstract f National Cardiac Arrest Audit (NCAA). https://www.icnarc.org/

11* Diem SJ, Lantos JD, TulskyJA. Cardiopulmonary Resuscitation on Television - Miracles and Misinformation. New Engl J Med 1996; 334: 1578-152. http://content.nejm.org/cgi/content/short/334/24/1578

12† Stiell IG, Wells GA, Field B et al, for the Ontario Prehospital Advanced Life Support Study Group. Advanced Cardiac Life Support in Out-of-Hospital Cardiac Arrest. New EnglJ Med 2004; 3 51:647-656.http://content.nejm.org/cgi/content/short/351/7/647 £ HerlitzJ, Bang A, GunnarssonJ, EngdahlJ, Karlson BW, LindqvistJ, Waagstein L. Factors associated with survival to hospital discharge among patients hospitalised alive after out-of-hospital cardiac arrest: change in outcome over 20 years in the community of Goteborg, Sweden. Heart 2003; 89: 25-30. http://heart.bmj.com/content/89/1/25.abstract

13* Sasson C, Rogers MAM, Dahl J, Kellermann AL. Predictors of Survival From Out-of-Hospital Cardiac Arrest. A Systematic Review and Meta-Analysis. Circulation: Cardiovascular Quality and Outcomes. 2010; 3: 63-81. http://circoutcomes.ahajournals.org/cgi/content/short/3/1/63

14† The Public Access Defibrillation Trial Investigators. Public-Access Defibrillation and Survival after Out-of-Hospital Cardiac Arrest. New Engl J Med 2004; 351: 637- 646. http://content.nejm.org/cgi/content/short/351/7/637

15* Morrison LJ, Visentin LM, Kiss A, Theriault R, Eby D, Vermeulen M, Sherbino J, Verbeek PR, for the TOR Investigators. Validation of a Rule for Termination of Resuscitation in Out-of-Hospital Cardiac Arrest. New Engl J Med 2006; 355: 478- 487. http://content.nejm.org/cgi/content/short/355/5/478

16* Neumar RW, Nolan J P, Adrie C et al. Post-Cardiac Arrest Syndrome. Epidemiology, Pathophysiology, Treatment, and Prognostication. A Consensus Statement From the International Liaison Committee on Resuscitation. Circulation 2008; 118: 2452-2483. http://circ.ahajournals.org/

17† Fischer M, Fischera NJ, Schuttlerb J. One-year survival after out-of-hospital cardiac arrest in Bonn city: outcome report according to the ‘Utstein style’. Resuscitation 1997; 33: 233-243. http://www.resuscitationjournal.com/ X http://www.karenannquinlan.org/

18* The Resuscitation Council. http://www.resus.org.uk/pages/DNARrstd.htm

19† Allowing a Natural Death: http://allowingnaturaldeath.org/

20† The NHS National Gold Standards Framework Centre. http://www.goldstandards framework.nhs.uk/

21* The NHS Gold Standards Framework. http://www.goldstandardsframework. nhs.uk/

22† Avon, Somerset and Wiltshire Cancer Services Allow a Natural Death (do not attempt resuscitation) Order. http://www.aswcs.nhs.uk/

23† Dignity in Dying. http://www.dignityindying.org.uk/

24* Treatment and care towards the end of life: Good practice in decision making. http://www.gmc-uk.org/End_of_life.pdf_32486688.pdf

25* Mental Capacity Act 2005. http://www.opsi.gov.uk/acts/

26* The Resuscitation Council. http://www.resus.org.uk/pages/witness.htm

 

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[1] from How We Die, Sherwin B Nuland, Alfred A. Knopf, New York, 1993

 

[2] It is very difficult to remove a feed-peg because it is a life-maintaining device. It requires a major medical/legal decision and this is not easy to come by.

 

[3] Ahronheim, J C, Morrison, R S, Baskin, S A, Morris, J, Meier, D E. Treatment of the dying in the acute care hospital. Advanced dementia and metastatic cancer. Archives of Internal Medicine, 1996; 156: 2094-100.

 

[4] A joule is a unit of heat, energy and force – in this case electricity.

 

[5] For an update, see Appendix I, Medical Aspects of Cardio-Pulmonary Resuscitation, by David Hackett, MD, FRCP, FESC.

 

[6] From Shirley Rosen,‘ Truman of St Helens’, published by Madrona Publishers, Seattle, Washington State, 1981

 

[7] Dylan Thomas, 1951.

 

[8] The Resuscitation Council. http://www.resus.org.uk/SiteIndx.htm

 

[9] The Resuscitation Council. http://www.resus.org.uk/pages/mediMain.htm

 

[10] Gwinnutt C, Columb M, Harris R. Outcome after cardiac arrest in adults in UK hospitals: effect of the 1997 guidelines. Resuscitation 2000; 47: 125-135. http://www.resuscitationjournal.com/article/S0300-9572(00)00212-4/abstract f National Cardiac Arrest Audit (NCAA). https://www.icnarc.org/

 

[11] Diem SJ, Lantos JD, TulskyJA. Cardiopulmonary Resuscitation on Television - Miracles and Misinformation. New Engl J Med 1996; 334: 1578-152. http://content.nejm.org/cgi/content/short/334/24/1578

 

[12] Stiell IG, Wells GA, Field B et al, for the Ontario Prehospital Advanced Life Support Study Group. Advanced Cardiac Life Support in Out-of-Hospital Cardiac Arrest. New EnglJ Med 2004; 3 51:647-656.http://content.nejm.org/cgi/content/short/351/7/647 £ HerlitzJ, Bang A, GunnarssonJ, EngdahlJ, Karlson BW, LindqvistJ, Waagstein L. Factors associated with survival to hospital discharge among patients hospitalised alive after out-of-hospital cardiac arrest: change in outcome over 20 years in the community of Goteborg, Sweden. Heart 2003; 89: 25-30. http://heart.bmj.com/content/89/1/25.abstract

 

[13] Sasson C, Rogers MAM, Dahl J, Kellermann AL. Predictors of Survival From Out-of-Hospital Cardiac Arrest. A Systematic Review and Meta-Analysis. Circulation: Cardiovascular Quality and Outcomes. 2010; 3: 63-81. http://circoutcomes.ahajournals.org/cgi/content/short/3/1/63

 

[14] The Public Access Defibrillation Trial Investigators. Public-Access Defibrillation and Survival after Out-of-Hospital Cardiac Arrest. New Engl J Med 2004; 351: 637- 646. http://content.nejm.org/cgi/content/short/351/7/637

 

[15] Morrison LJ, Visentin LM, Kiss A, Theriault R, Eby D, Vermeulen M, Sherbino J, Verbeek PR, for the TOR Investigators. Validation of a Rule for Termination of Resuscitation in Out-of-Hospital Cardiac Arrest. New Engl J Med 2006; 355: 478- 487. http://content.nejm.org/cgi/content/short/355/5/478

 

[16] Neumar RW, Nolan J P, Adrie C et al. Post-Cardiac Arrest Syndrome. Epidemiology, Pathophysiology, Treatment, and Prognostication. A Consensus Statement From the International Liaison Committee on Resuscitation. Circulation 2008; 118: 2452-2483. http://circ.ahajournals.org/

 

[17] Fischer M, Fischera NJ, Schuttlerb J. One-year survival after out-of-hospital cardiac arrest in Bonn city: outcome report according to the ‘Utstein style’. Resuscitation 1997; 33: 233-243. http://www.resuscitationjournal.com/ X http://www.karenannquinlan.org/

 

[18] The Resuscitation Council. http://www.resus.org.uk/pages/DNARrstd.htm

 

[19] Allowing a Natural Death: http://allowingnaturaldeath.org/

 

[20] The NHS National Gold Standards Framework Centre. http://www.goldstandards framework.nhs.uk/

 

[21] The NHS Gold Standards Framework. http://www.goldstandardsframework. nhs.uk/

 

[22] Avon, Somerset and Wiltshire Cancer Services Allow a Natural Death (do not attempt resuscitation) Order. http://www.aswcs.nhs.uk/

 

[23] Avon, Somerset and Wiltshire Cancer Services Allow a Natural Death (do not attempt resuscitation) Order. http://www.aswcs.nhs.uk/

 

[24] Treatment and care towards the end of life: Good practice in decision making. http://www.gmc-uk.org/End_of_life.pdf_32486688.pdf

 

[25] Mental Capacity Act 2005. http://www.opsi.gov.uk/acts/

 

[26] The Resuscitation Council. http://www.resus.org.uk/pages/witness.htm

 

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