Ethics Module

1. Ethics Module Shades of Grey in Everyday Medicine MODULE 6

2. Why learn about ethics? • No ‘right answer’, but an ethical framework allows an approach to difficult decision making • Review key concepts in medical ethics • Selected topics to cover • Truth telling • Food and fluid • Requests for a hastened death

3. Considerations in ethical decision making • Deciding what we ought to do in situations where there is no single correct answer • When there is no obvious ‘right’ or ‘wrong’ • The choice may lie between two or more equally unsatisfactory alternatives • There may not seem to be a satisfactory solution at all • Requires us to consider, and reconsider our ordinary actions, judgments and justification

4. Some key concepts • Beneficence • Promote patient well-being • Non- maleficence • Do no harm • Autonomy • Respect patient self-determination • Justice • Protection of vulnerable populations and fair allocation of resources Storey & Knight 2003

5. Clinical Pragmatism • Assess the patient’s medical condition • Determine and clarify the diagnosis assess the patient’s ability to make decisions • which would include an evaluation of the patient’s beliefs, values, preferences and needs Fins et al. 1997

6. Clinical Pragmatism (cont.) • Consider institutional arrangements and other social norms that may affect the patient’s care • Identify the range of moral considerations that may be relevant to the patient’s case • Suggest provisional goals of care Fins et al. 1997

7. Clinical Pragmatism (cont.) • Negotiate an ethically acceptable plan of action • Implement the agreed-upon plan • Evaluate the results of intervention • Undertake periodic reviews and modify the course of action as the case evolves Fins et al. 1997

8. Truth-telling • Honesty important and valued • How much truth? • All they can comprehend? • All they want to know? • (what do they want to know?) • Is less then full disclosure justifiable? • What the truth is, remains a clinical judgment Hebert et al. 1997; Surbone 2006

9. Truth-telling: whose imperative? • 93% of Canadian physicians stated that at least 60% of their patients wanted to know about the terminal stage of their illness, only 18% of South American, and 26% of European physicians said this (P < 0.001). • However, almost all of the physicians agreed that if they had terminal cancer they would like to know Bruera et al. 2000

10. The ethical dilemma of Truth-telling • The patients right to full disclosure, or their right to delegate decisions (autonomy) • Sharing bad news may cause serious harm through anxiety, distress and depression (non-maleficence) or knowing the truth will empower the patient and allow them to plan for their future (beneficence) Gold 2004

11. “Don’t tell Mum she has cancer” • A 75 year old Greek speaking lady who lives independently presents with complications of known metastatic breast cancer. Her main symptomatic problem is painful boney metastases, one of which may require orthopedic stabilisation. • Her family do not want her to know her diagnosis and refuse to allow you to see her alone or with an interpreter. • You find out that this has been the case throughout her out-patient management, which has included chemotherapy and radiotherapy. • How will you manage this situation?

12. “Don’t tell Mum she has cancer” • Principles (assuming patient competent) • Respect for the family’s judgment • Recognition that it can be very burdensome for the family • Clear understanding that in your role you have a duty to the patient and will not lie • Equally you won’t give information that isn’t requested • Independent interpreter is essential • Need to establish the patient’s consent for family members to receive information and make decision on their behalf

13. “Don’t tell Mum she has cancer” • Back to the case…. • After discussion, the family agreed to an independent interpreter (family sat in). • The patient emphatically did not want to discuss her diagnosis or treatment, referred to family. • Improved therapeutic relationship with all. • Eventually, patient spontaneously confided through interpreter, that she was well aware of her situation. • This came as an immense relief to the family, and they were able to talk frankly and were ultimately very appreciative.

14. ‘Today I bent the truth to be kind, and I have no regret, for I am farsurer of what is kind than I am of what is true.’ Robert Brault

15. Artificial nutrition and Hydration (ANH) • Highly emotive “starving to death” • Strong cultural and social influences • Very much dependent on the illness and the stage of that illness • A frequently raised issue on the wards, recent test case in courts (BVW)

16. “Don’t let him starve to death” • A 61 year old man with advanced head and neck cancer has had an NGT inserted at another institution during palliative radiotherapy for fungating recurrent neck tumours. He is unable to have a PEG or PEJ because of previous surgery. • There are no further disease specific therapies available, he is declining functionally and his neck wound has broken down and formed a fistula. • He is delirious, with no reversible cause and has removed his NGT. His daughter demands that the NGT be reinserted. • How would you approach the situation?

17. ANH: the evidence • We have evidence that ANH may improve survival in those: • in a permanent vegetative state • with extreme short bowel syndrome • with MND (and bulbar dysfunction) • with acute phase stroke or head injury • receiving short term critical care • undergoing intensive head and neck radiotherapy • proximal small bowel obstruction Cassaret & Caplan 2005

18. ANH: the evidence • Conflicting evidence for patients having chemotherapy, after cancer surgery • Large evidence base with clear consensus that ANH is not of benefit in patients with advanced dementia • Majority of evidence in patients with terminal illness demonstrates little meaningful survival benefit Cassaret & Caplan 2005; Gillick & Volandes 2008; Fainsinger & Pereira 2005

19. Burdens of ANH • Complications of NGT, central access • May keep them in a hospital environment, restrict mobility • At the end of life, can worsen oral, pulmonary secretions, peripheral edema and ascites • Patient may require restraint • Alters natural history of the underlying disease, ‘keeping them alive’ for other cancer complications and different death trajectories Philip & Depczynski 1997

20. The ethical dilemma of ANH • Will ANH harm or benefit (beneficence/non-maleficence)? • Does the patient have the right to demand a treatment that is unlikely to have clinical benefit? (autonomy) • What are the access and cost issues? (justice)

21. Decision-making in advanced disease • What is the prognosis of the disease? • What is the natural history of the disease? • What is the likely outcome of the treatment? • Will it alter prognosis / natural history? • Does the patient have rehab potential? • What is the burden of treatment? • What are the patient’s aims/goals? Cowcher & Turner 1990

22. “Don’t let him starve to death” • Principles: • Acknowledge the symbolic value of nutrition • Clearly explain the clinical context, e.g. reduced oral intake is usually a normal part of the dying process • ANH is a medical intervention, with potential risks and benefits (and should be evaluated as such) • ANH will not necessarily improve comfort or quality of life • Thirst and comfort is better managed with good mouth care • Encourage alternatives, such as hand-feeding, involvement in mouth care, etc…. Casarett & Caplan 2005; Gillick & Volanders 2008

23. “Don’t let him starve to death” • A family meeting was held • The families concerns and feelings about his nutrition were acknowledged • The change in the patients clinical situation was discussed; he was now in the final stages • ANH was described as a medical intervention, which in this situation would be very difficult, would not contribute to his comfort, nor was it likely to prolong his life • It was agreed to allow oral food and fluids for comfort, accepting the aspiration risk, and ensure good mouth care – with no ANH

24. “This approach responds to the symbolic need for nutrition without subjecting an uncomprehending, frail individual near the end of life to an invasive technological procedure….. And it accepts that good palliative care goes beyond the needs of the patient to encompass the concerns of the family.” Gillick & Volanders 2008

25. Euthanasia & Physician Assisted Suicide • Huge topics • Deliberate and intentional killing • Clinically, legally and ethically distinct from: • Withholding treatments • Discontinuing treatments • Providing proportionate symptom relief

26. “The difference between what I do and euthanasia is that palliative care does whatever is necessary to alleviate the suffering while euthanasia is focused on eliminating the sufferer.” Dr Iyra Byock

27. “You wouldn’t treat a dog like this” • A 52 year old woman has advanced gynaecological malignancy complicated by SBO. She is clearly dying and asks if you will “give her a big injection” • Her distressed daughter clarifies her mother’s request for euthanasia, and says “you wouldn’t treat a dog like this” • How would you handle this situation?

28. Desire to die statements (DTDS) • What do they mean? • Reasons often multiple, complex and fluctuate over time • “Desire for death must be considered first as a symptom, not as a clear and autonomous wish that must be respected” • Must be investigated and evaluated Pochard et al. 2001

29. Reasons for desire for hastened death • Expression of feelings or current reactions to their circumstances • A communication of distress and suffering; and/or to explore options for relieving their distress • Seeking information about suicide or euthanasia • Specifically seeking health professional assistance and acknowledging suicidal intent Hudson, Kristjanson et al. 2006

30. DTDS: how to approach them • Assess the nature of the DTDS • Current feelings/fears: “Some people feel so overwhelmed by things that everything is ‘just too much’, do you ever feel like that” • Suffering / distress: “What are the hardest things for you at the moment?” • Considering euthanasia/suicide: “You’ve referred to ‘wishing it were all over’, can you share with me what you are thinking in that regard?” • Seeking assistance: “Can you tell me how you’ve come to feel like this and why you want to take this action?” Hudson, Schofield et al. 2006

31. DTDS: how to approach them • Assess contributing factors / preliminary intervention • Current feelings / fears: • Assess whether they have information needs • Reassure about the goals of team, non-abandonment • Recognise and enlist relevant coping strategies • Suffering / distress: • Look for reversible symptomatic issues • Reassure about the treatment goals • Try to give patient the more control eg. assurance about no life prolonging measures • Engage appropriate team members Hudson, Schofield et al. 2006

32. DTDS: how to approach them • Assess contributing factors / preliminary intervention • Considering euthanasia/suicide: • Ensure end of life choices have been fully explored • Ensure the aims of palliative care are clear • Discuss the consequences for friends / family • Set up agreements for further discussion • Seeking assistance: • Is the patient aware that legally you cannot assist? • Emphasise non-abandonment • Screen for relevant past history • In these categories, consider specialist referral Hudson, Schofield et al. 2006

33. “You wouldn’t treat a dog like this” • Back to the case: • More detailed discussions were conducted • The patient feared becoming a burden to her family, and her daughter was concerned about the dying process and did not want her mother to suffer. • The goals of palliative care were clearly explained • The patient remained on the ward, cared for by hospital staff, with no life prolonging measures to be undertaken.

34. Where to get help • These situations are challenging, even with experience and all the right skills • Use the multi-disciplinary team • Enlist support from senior clinicians • Consider a palliative care referral • Consider consulting the clinical ethics service in your hospital • Consider, depending on the circumstance, involving the patient advocate

35. “ I’m not afraid of death, I just don’t want to be there when it happens” “ I don’t believe in an after-life, but I am bringing a change of underwear” Woody Allen

36. References • Bruera E, Neumann CM, Mazzocato C, Stiefel F, Sala R Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patientsPalliative Medicine 2000;14:287-298 • Casarett JK and Caplan A Appropriate use of artificial nutrition and hydration: fundamental principles and recommendationsNew England Journal of Medicine 2005;353(24):2607-2612 • Cowcher K and Hanks GW Long-term management of respiratory symptoms in advanced cancer Journal of Pain and Symptom Management 1990;5(5):320-330 • Ganzini L, Nelson HD, Schmidt TA, Kraemer DF, Delorit MA, Lee MA Physicians’ experiences with the Oregon Death with Dignity ActNew England Journal of Medicine 2000;342:557-563 • Gillick MR and Volandes AE The standard of caring: why do we still use feeding tubes in patients with advanced dementia?Journal American Medical Directors Association 2008;9:364-367 • Gold M Is honesty always the best policy: ethical aspects of truth tellingInternal Medicine Journal 2004;34:578-580 • Fainsinger RL and Pereira J Clinical assessment and decision making in cachexia and anorexia IN Oxford Textbook of Palliative Medicine 3rd Edition Edited by Doyle D, Hanks G, Cherny N and Calman K 2005:533-546 • Fins JJ, Bacchetta MD, Miller FG Clinical pragmatism: a method of moral problem solving Kennedy Institute of Ethics Journal 1997;7:129-145

37. References • Hebert PC, Hoffmaster B, Glass KC and Singer PA Bioethics for clinicians: 7. Truth tellingCanadian Medical Association Journal 1997;156(2):225-228 • Hudson PL, Kristjanson LJ, Ashby M, Kelly B, Schofield P, Aranda S, O’Connor M, Street A Desire for hastened death in patients with advanced disease and the evidence base of clinical guidelines: a systematic reviewPalliative Medicine 2006;20:693-701 • Hudson PL, Schofield P, Kelly B, Hudson R, Street A, O’Connor M, Kristjanson LJ, Aranda S Responding to desire to die statements from patients with advanced disease: recommendations for health professionals Palliative Medicine 2006;20:703-710 • McDonald N, Alexander R and Bruera E Cachexia-anorexia-asthenia Journal of Pain and Symptom Management 1995;19:151-155 • Philip J, Depczynski B The role of total parenteral nutrition for patients with irreversible bowel obstruction secondary to gynaecological malignancyJournal of Pain and Symptom Management 1997;13(2):104-111 • Pochard F, Azoulay E, Grassin M Assessing requests for euthanasia from terminally ill patientsJournal American Medical Association 2001;285(6):734 • Storey P, Knight C American Academy of Hospice and Palliative Medicine’s Self Study Program: UNIPAC 6 Ethical and legal decision making when caring for the terminally ill 2nd edition, Mary Ann Liebert Inc Publishers, New York; 2003 • Searight HR and Gafford J Cultural diversity at the end of life: issues and guidelines for family physiciansAmerican Family Physician 2005;71:515-522 • Surbone, A Telling the truth to patients with cancer: what is the truth?Lancet Oncology 2006;7(11):944-950 • Young R Personal Autonomy: Beyond negative and positive liberty Kent: Croom Helm Ltd. 1986