In the Midst of Life

by Jennifer Worth

  National Council for Palliative Care (2002b) CPR Policies in Action. London: NCPC.

  Negovsky V A, Gurvitch, A M. (1995) Post-resuscitation disease: a new nosological entity. Its reality and significance. Resuscitation; 30: 1, 23-27.

  Newman, R. (2002) Developing guidelines for resuscitation in palliative care. European Journal of Palliative Care; 9: 2, 60-63.

  Nolan, J P et al. (2007) Outcome following admission to UK intensive care units after cardiac arrest: a secondary analysis of the ICNARC Case Mix Programme Database. Anaesthesia; 62: 12,1207-1216.

  Randall, F, Regnard, C. (2005) A framework for making advance decisions on resuscitation. Clinical Medicine; 5: 4, 354-360.

  Sandroni, C et al. (2007) In-hospital cardiac arrest: incidence, prognosis and possible measures to improve survival. Intensive Care Medicine; 33: 2, 237-245.

  Varon, J et al. (1998) Should a cancer patient be resuscitated following an in-hospital cardiac arrest? Resuscitation; 36: 3, 165- 168.

  Vitelli, C et al. (1991) Cardiopulmonary resuscitation and the patient with cancer. Journal of Clinical Oncology; 9: 1, 111-115.

  Wagg, A et al. (1995) Cardiopulmonary resuscitation: doctors and nurses expect too much. Journal of the Royal College of Physicians; 29: 1, 20-24.

  Wallace, K et al. (2002) Outcome and cost implications of cardiopulmonary resuscitation in the medical intensive care unit of a comprehensive cancer centre. Supportive Care in Cancer; 10: 5, 425-429.

  Related articles in Nursing Times

  Acute respiratory failure 2 - nursing management. 16 September 2008

  An audit of nursing observations on ward patients. 24 July 2008

  Guidelines focus on improving patient safety in mental health. 28 November 2008

  National Patient Safety Agency issue an alert on mental health resus. 2 December 2008

  Should patients who are at the end of life be offered resuscitation? 23 January 2009

  APPENDIX IV

  The Principles of Palliative Care

  Palliative care is governed by certain principles, which guide the care given. It:

  Provides relief from pain and other distressing symptoms

  Affirms life and regards death as a normal process

  Intends neither to hasten or postpone death

  Integrates the psychological and spiritual aspects of patient care

  Offers a support system to help the family cope during the patient’s illness and in bereavement

  Uses a team approach to address the needs of patients and their families, including counselling, if indicated

  Will enhance quality of life and may positively influence the course of the illness

  Is applicable early in the course of the illness, in conjunction with other therapies that may prolong life, such as chemotherapy or radiation therapy, and includes investigations needed to better understand and manage distressing clinical complications. (World Health Organization, 2004)

  Other principles of palliative care promote:

  Quality of life: palliative care tries to enhance this as much as is realistically possible

  Patient choices: patient autonomy is respected and encouraged as much as possible

  Open communication

  Looking after the whole person which includes physical, emotional, psychological, spiritual and intellectual issues

  Looking after the whole family because the patient is not an isolated unit but part of a whole social unit. Their disease, and its effects may have catastrophic influences on this social unit and its dynamics.

  Involving support from the whole multi-disciplinary team (MDT): this includes professionals in the hospital and community such doctors, nurses, palliative care specialists, hospice services, dieticians, physiotherapists, occupational therapists, and chaplaincy. (Regnard and Kindlen, 2002)

  Hydration, nutrition, sedation and pain relief in end-of-life care

  Adapted from Palliative Care Resuscitation by Madeline Bass, published in 2006 by John Wiley and Sons: pp. 8, 13-14 and 113-115.

  The subject of whether to use artificial hydration and nutrition in terminally ill patients, which could be included under the cloak of ‘active treatment’, has brought about different points of views. Rousseau (2000) states that many doctors and nurses feel food and fluid is always a basic need for human existence. However, although this is true, tube-feeding terminally ill patients (either via nasogastric, nasojejunostomy, gastrostomy or via parenteral routes, such as total parenteral nutrition - TPN) has not been found to enhance or prolong life. Remember, tube-feeding in no way resembles normal eating since it is a passive process that totally bypasses the sensory part gained from oral feeding: there is no smell, taste or texture of feeling food in the mouth. Tube-feeding can also have serious complications such as aspiration, nasal cartilage erosion, and tube displacement, which may require an uncomfortable, perhaps even painful, replacement.

  It is important for healthcare professionals, patients and their family carers, to realise that weight loss and anorexia are part of the dying process and that the absence of tube-feeding does not lead to death caused by starvation or dehydration; tube-feeding does not lengthen life. In fact it may encourage tumour growth (Rousseau, 2000).

  It may be felt by some that artificial hydration is not required for various reasons, a feeling echoed by the National Council for Palliative Care (NCPC, 2002). Their reasons include that, towards death, the person’s need for nutrition and fluid is lessened, and evidence suggests that artificial hydration in terminal illness neither prolongs life nor helps symptom control (see list of references for more details). Artificial hydration is not usually needed if good mouth care is given – think how quickly thirst is quenched when a few mouthfuls of drink are taken: it is some time before the fluid is actually absorbed by the body’s system, yet almost immediately there is some relief from the thirst. Hence, it is felt that good mouth care can achieve the same results.

  The NCPC (2002) continue that certain medications the terminally ill patient may be receiving can cause a dry mouth, such as morphine. Simply adding artificial hydration will not lessen this. They state that artificial hydration being used to correct the correctable is appropriate, such as in hypercalcemia, diarrhoea and delirium caused by electrolyte imbalance. Rousseau (2000) also argues that artificial hydration may cause a complication known as ‘third spacing’, which can cause peripheral and pulmonary oedema from low oncotic pressures, secondary to low blood albumen [protein] levels and poor nutritional status. It can also increase gastro-intestinal and pulmonary secretions, increase urinary output, and in the end probably cause more patient discomfort then less (Printz, 1992; Kinzbrunner, 1995). It helps, if needing to stop fluids for these reasons, that the family carers are supported during this decision. If they feel they would prefer artificial fluids or nutrition to continue, sensitive explanation why they need to be stopped (because they are causing more side effects than benefits) would need to be given. However, if there are no noticeable side effects from the fluids or nutrition already being given, then there is no reason to stop them.

  A blanket policy on artificial hydration is not an individual approach to patient care. Each terminally ill patient should be assessed according to their personal need, present symptoms, and family carers’ concerns. Although caring for the patient and their symptoms is important, the patient needs to be cared for as part of a social unit, and it must be recognised how this will affect those close to them. The patient is not a solitary unit: they are part of a family unit, which needs care as a whole.

  Other thoughts concerning artificial hydration are that it is necessary, particularly when sedation is being used (Craig, 2002). This will help flush out the toxins from the medication used, and prevent over-sedation. If the aim of sedation is to cause the patient to become unconscious, hydration must be used to prevent death through dehydration (unless of course there are counter-indications for the use of fluids). Hydration may also be useful in patients experiencing delirium
caused by abnormal electrolyte levels as it can increase the elimination of opioid metabolites. If a patient is experiencing terminal agitation and requiring sedation, it may be appropriate to continue the fluids unless the patient develops terminal secretions, at which point their body would not have been able to cope with the extra fluids. If fluids are not started, the nurses and doctors need to observe the patient to prevent too much sedation being given: enough to hold the symptoms at bay but not enough to sedate unnecessarily. This is done by starting with a low dose of sedative in a syringe driver and giving extra doses as required, and thus increasing the doses in the syringe driver according to requirements. If there are concerns about the patient needing hydration, as long as there are no terminal secretions present some fluids could be commenced subcutaneously, However, good mouth care can also help prevent [the patient] experiencing thirst. Remember, the assessment of the need for fluids is an individual one, based on many issues.

  Beauchamp and Childress (2001) describe the Doctrine of Double Effect as, ‘a single act having two foreseen effects, one good and one harmful’. In palliative care an example of this is the giving of an analgesic to a dying patient who is in pain. If a doctor or nurse gives something to intentionally kill them, this act is actually murder. However, if they give something for pain relief at an acceptable dose, but the patient quickly deteriorates and dies, then this is acceptable because the intention of giving the analgesic was good. There are four elements to the double effects doctrine described by Beauchamp and Childress (2001):

  The nature of the act: the act must be good in itself.

  Intention: this must be for good effect. The bad effect may be noted but must not be intended.

  Distinction between means and effects: the bad effect must be means to the good effect. If the good effect was the result of the bad effect the person doing the act would intend the bad effect in pursuit of the good.

  The good effect must outweigh the bad: the bad effect is permissible only if a proportionate reason compensates for permitting the foreseen bad effect.

  The important thing about any patient care, whatever the disease, illness or situation, is that it must be appropriate. In end-of-life care there are now many drugs that can manage particular symptoms, such as pain, in the majority of patients. However, it is important not to reach for the drugs first, before ruling out other more simple interventions. For instance, if a dying patient seems agitated or in pain, they will be twitching, perhaps frowning, or groaning. Many healthcare professionals would assume the person is agitated either because of pain or simply because of terminal agitation (agitation which occurs when a patient is dying). This certainly may be the case. However, there are many causes of pain and agitation, not simply disease and the dying process. These must be ruled out first. For instance, simply changing a patient’s position can make a big difference and settle them immediately. Imagine lying in a bed in exactly the same position for several hours, and not being able to move yourself at all: you can begin to imagine why some patients do indeed become agitated. And dying patients still may need to empty their bowel or bladder, and because they cannot verbalise this, it needs to be checked by those caring for the person. These issues can be settled relatively simply with the insertion of a catheter into the bladder, or by a professional assessing whether they have a full rectum and therefore administering an enema to relieve the symptoms. Other causes may be a dry or sore mouth, stiff limbs, which can be settled with some gentle passive movements, and painful wounds, or the developing of pressure sores. The latter may indeed require medications to manage symptoms of pain: however, simply changing a soiled dressing and repositioning the patient may often be enough to assist.

  The golden rule is always to firstly treat anything which can be reversed without drugs. Some of these may take time to work, such as administering an enema: in this case it may be appropriate to give a small amount of medication to settle the patient in the meantime, as it is very hard for relatives and family to watch them in this way.

  To illustrate, here are two examples of when simple measures are more appropriate than medications. The first one concerns a gentleman who was dying. He was not expected to live for more than a few days and he appeared agitated. The professionals caring for him administered opiates, which appeared to settle him, but only for very short periods. On visiting him, a nurse specialist giving mouth care noticed his mouth was very sore, full of ulcers and thrush. She suggested regular mouth care with thrush medication and oral gels to hydrate the mouth. Within a few minutes he became very settled, and with a routine of good mouth care he did not require any further medication, and died peacefully the next day.

  The other example concerns a lady who had had a massive stroke and was deteriorating in a care home. She, also, appeared very agitated, and was also given strong pain relievers, which did settle her. However, she was becoming more and more drowsy, less responsive, and was requiring quite large amounts of medication to keep her comfortable. One very attentive care assistant noticed that one of her hands was curled tightly into a fist caused by the stroke. She carefully uncurled the hand to find that the lady’s nails had grown considerably and were digging into the palm, had broken the skin and the wounds had become infected. With some careful and much needed dressings and cushioned protection to the hand, as well as by cutting this lady’s nails, she became much more comfortable and again did not require the massive amounts of medication she had appeared to need before.

  When someone is dying, those caring for them must act as their advocates: they must be the eyes and ears for that patient, and careful assessment and interventions can make sure they are comfortable, and that their family and friends recognise how respected and cared for they are.

  References: artificial hydration and nutrition:

  Andrews, M, Bell, E R, Smith, S A, Tischler, J F, Veglia, J M (:993)- Dehydration in terminally ill patients: is it appropriate in palliative care? Postgraduate Medicine: 93: 201-208.

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

  Dunphy K et al (1995). Rehydration in palliative and terminal care: if not, why not? Palliative Medicine 9: 221-228.

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

  Fainsinger, R L, MacEarchen, T, Miller, M J et al (1994). The use of hypodermoclysis for rehydration in terminally ill cancer patients. Journal of Pain and Symptom Management 9: 298-302.

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

  Oliver, D (1984). Terminal dehydration (letter) Lancet, 11: 631.

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

  Rosner, F (1987). Withdrawing fluids and nutrition: an alternative view. NY State Journal of Medicine. 87: 591-593. In: Rousseau, P (2001). Ethical and legal issues in palliative care. Palliative Care, 28 (2) 391-399.

  Sommerville, A (1993). Cessation of treatment, non-resuscitation, aiding suicide and euthanasia. In: Fisher, F, Mcdonald, N J, Weston, R (1993). Medical Ethics Today: its Practice and its Philosophy. BMJ Publishing Group, London.

  Tattersall, M H (1993)- Hypercalaemia: historical perspectives and present management. Supportive Cancer Care: 1: 19-25.

  Twycross, R G, Lichter, I (1993). The terminal phase. In: Doyle, D, Hanks, G, MacDonald, N (Eds) Oxford Textbook of Palliative Medicine. Oxford University Press.

  Other references:

  Beauchamp, T L, Childress, J F (2001). Principles of Biomedical Ethics (5th Edition). Oxford University Press.

  Craig, G (2002). Terminal sedation. Catholic Medical Quarterly, February.

  Kinzbrunner, B M (1995). Ethical dilemmas in hospice and palliative care. Support Care Cancer 3: 28-36. In: Rousseau, P (2001). Ethic
al and legal issues in palliative care. Palliative Care, 28 (2) 391-399.

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

  Printz, L A (1992). Terminal dehydration: a compassionate treatment. Archives of Internal Medicine: 152: 697-700.

  Regnard, C, Kindlen, M (2002). Supportive and Palliative Care: An Introduction. Oxford: Radcliffe Medical Press. Cited in Bass, M (2006). Palliative Care Resuscitation. John Wiley and Sons: Chichester.

  Rousseau, P (2000). The ethical validity and clinical experience of palliative medicine. Mayo Clinical Proctology 75: 1064-1069. In: Rousseau, P (2001). Ethical and legal issues in palliative care. Palliative Care, 28 (2) 391-399.

  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