THE ETHICS OF SEDATION & ARTIFICIAL HYDRATION IN THE TERMINALLY ILL

1. THE ETHICS OF SEDATION & ARTIFICIAL HYDRATION IN THE TERMINALLY ILL To do or not to do? Mr R Becker Senior Lecturer in Palliative Care Staffordshire University and Severn Hospice Shropshire

2. Intent whether a decision to sedate and/or hydrate reflects an intention to relieve pain and suffering, discontinue burdensome or ineffective treatment, or to cause death

3. The Doctrine of Double Effect If doing something morally good has a morally bad side-effect it's ethically OK to do it - providing the bad side-effect was not intended. This is true even if you foresaw that the bad effect would probably happen.

4. Other ethical issues of significance • Benefit to the patient • Possible harm caused to the patient • Respect for patient autonomy and the right of self determination – i.e. choice • Respect for the moral integrity of the health professionals – codes of practise • Sanctity of life ethic

5. Sedation?

6. The challenge of palliative sedation • Confusion and inconsistency in the literature related to conceptual definitions of the term “terminal sedation” • Disagreements over the clinical indications for its use • Inconsistency in pharmacological approaches to sedation • A paucity of qualitative research examining the contextual factors and processes influencing the attitude and behaviour of health professionals and family members Beel et al 2002

7. A Question of Definition? In the beginning was “terminal sedation” (Enke1991) Negative association with the word terminal. Palliation is a positive response to distressing symptomatology The term does not give a clear indication of what sedation is all about i.e. the intent The term suggests that terminal sedation is about terminating the life of the patient.

8. Palliative Sedation “the intentional administration of sedative drugs in dosages and combinations required to reduce the consciousness of a terminal patient as much as necessary to adequately relieve one or more refractory symptoms” Broeckaert B 2002

9. Clinical Indicators for PalliativeSedation Unendurable and refractory symptoms? • Uncontrolled physical pain • Respiratory distress • Delirium • Nausea and vomiting • Terminal agitation and restlessness • Psychological and/or spiritual distress Ventafridda et al 1990, Cherny & Portenoy 1994, Chater et al 1998)

10. The incidence of refractory symptoms • 16% hospice patients (Fainsinger et al 1991) • 26% hospital patients (Stone et al 1997) • 36% in the last 48 hrs (Lichter & Hunt 1990) • 48% hospice patients (Morita 1996) • 50% hospital patients (Braun et al 2000) • 52.5% unendurable symptoms (Ventafridda 1990)

11. Limitations of the current research into palliative sedation • Most studies appear to be either surveys of existing practise or empirical observations of practise • We lack in understanding of the context of sedation and the human interactions that influence the decision to sedate. • Qualitative methodology : grounded theory, clinical ethnography

12. The drugs most commonly used for palliative sedation • Benzodiazepines – Midazolam & Lorazepam • Neuroleptics – Haloperidol • Barbiturates – Phenobarbitol • Opioids alone should never be used for sedation • Opioids where px should be continued alongside the sedative drugs.

13. Mean survival of patients after starting sedation Porta Sales et al (1999) 3.2 days Porta Sales (2001) 2.4 days Fainsinger et al (2000) 2.4 days Other studies Fainsinger (1998) 4hrs – 12 days Menten (2000) 1 – 18 days

14. Artificial Hydration?

15. Artificial hydration: The Current Issues • The literature currently demonstrates considerable differences in clinical practice regarding the use of artificial hydration in dying patients • Varied opinions: a crucial part of the management strategy, or unnecessary burden • There is only a small body of research available – much of which is now quite old, and clinical experience appears to provide the basis for most current practice • There appears to be no consistency in the amounts prescribed or the rates and efficiency of delivery

16. A Selection of Viewpoints: • Dehydration can be seen as a normal part of the dying process, patients who are dying of cancer usually give up eating and then drinking, they become too weak to even take fluids (Fox 1996) • In the same way that hunger is not a feature of anorexia/cachexia, thirst is not a symptom associated with decreasing fluid intake in those close to death (Dunlop et al 1995) • Most patients failing to drink in the terminal phase of their illness, not given artificial hydration, do not suffer the normal symptoms of dehydration (Dunphy et al 1995)

17. The symptoms of natural dehydration close to death include: • Dry mouth • Headache • Fatigue • Cognitive Impairment • Circulatory collapse • Renal failure • Anuria

18. Potential Burdens of Artificial Hydration close to Death • Can lead to fluid retention and overload leading to the development of peripheral or pulmonary oedema • Can result in dyspnoea • Cannula in the arm can be uncomfortable • Risk of infection or phlebitis • Changes in body image • Can give confusing messages to the family – false hope of cure and extended life • May be a physical barrier between the patient and family

19. Pain reduction in natural dehydration at the end of life • A reduction in oedema around tumours leads to decreased pain from nerve compression (Zerwekh 1997) • The increase in ketones caused by reduced calorific intake, causes a loss of sensation (Printz 1989)

20. Research Into Artificial Hydration • Marin et al (1989) Surveyed 448 doctors and found that 53% would administer IV fluids to a comatose patient with widespread malignant metastases. 83% would resite the cannula as required and 26% would insert a central venous line if no other route were available. “patient comfort” was the reason given. • Collaud et al (1991) Surveyed 397 doctors and found that 28% would use artificial hydration in conscious, but dying patients and 44% in unconscious ones. When asked to assess the discomfort of dehydration 42% felt that dying patients suffer significantly and 33% that patients scarcely suffer.

21. House (1992) Compared views of hospice nurses and doctors with general hospital staff and found that hospice staff did not advocate artificial hydration whereas 43% of hospital nurses felt that the patient suffered if hydration was not maintained in the dying. • Malone (1995) Surveyed doctors in an acute hospital setting and found that 75% would use IV fluids with the dying and 40% would consider a central line if access was difficult. • Harvath et al (2004) Studied attitudes of hospice nurses & social workers to a patients voluntary refusal of food & fluids. Results indicated a positive perception by staff for this choice by patients.

22. UK National Council for Palliative Care Guidelines (1997 updated 2005) • A blanket policy of artificial hydration or no artificial hydration is ethically indefensible. • Towards death a persons desire for food and drink lessens. • Thirst or dry mouth in the terminally ill may be caused by medication…..Good mouth care is essential • Good palliative care includes the option of artificial hydration where there is a correctable cause…. • Assessment should be made on a daily basis re - benefits and harm • Health professionals must not subordinate the interests of patients to the wishes of distressed relatives…..

23. Key Questions and Care Strategies • Engage in early discussion with the patient and family to determine the patients wishes • Establish whether the patient has an advance directive • Reassure the patient and family that at all times the priority is the comfort and support of the patient. • Be tactfully resistant to sacrificing the interests of the patient to the emotional distress of the relatives • Always present the facts carefully and sensitively - understand the context and dynamics around the bedside

24. Key Questions and Care Strategies • Remember - thirst in the conscious patient should always be actively addressed • Does the patient appear to “feel better” as a result of the infusion? Is his/her well being/ alertness enhanced? • What are the psychosocial effects? i.e. is the infusion interfering with family interactions • Ensure pain and symptom relief is adequate and assessed regularly

25. Key Questions and Care Strategies • Essential comfort measures : Regular mouth care, offer ice cubes and sips of water if tolerated. Provide cream for lips to prevent cracking, pressure area care, keep the patient clean and dry at all times • Reassure the family that sedation is a valid means of symptom control where no other measures are possible to relieve distress • Reassure the family that stopping IV fluids is not stopping care

28. Thank you for listening. Email: bobb@severnhospice.org.uk