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Raising difficult issues leading to shared decision making

Raising difficult issues leading to shared decision making. Assoc Prof W Silvester Director, Respecting Patient Choices Program Intensive Care Specialist, Austin Hospital Medical Consultant, DonateLife Victoria. A regular question to doctors:. Don’t you always have to save life?

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Raising difficult issues leading to shared decision making

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  1. Raising difficult issues leading to shared decision making Assoc Prof W Silvester Director, Respecting Patient Choices Program Intensive Care Specialist, Austin Hospital Medical Consultant, DonateLife Victoria

  2. A regular question to doctors: • Don’t you always have to save life? • Don’t you have to swear the Hippocratic oath?

  3. Hippocratic Oath: 12th century Byzantine manuscript

  4. Hippocratic Oath • I swear by Apollo the healer……. • I will prescribe regimens for the good of my patients according to my ability and my judgment • and never do harm to anyone. Beneficence and non-maleficence

  5. What’s our duty of care as a doctor? “To take reasonable steps (as other reasonable doctors would) to save or prolong life or act in the patient’s best interests” Prof Loane Skene University of Melbourne “Law and Medical Practice: Rights, Duties, Claims and Defences” 2008

  6. End of life decision making Can be difficult, but what are the realities? Decisions have to be made, whether we like it or not. Paternalism - “autonomy”  shared decision making Under Australian common law, the final decision is made by the doctor. The factors that influence the decision: - the patient’s prognosis - the patient’s preferences (outcome & treatment) - the doctor’s own values & beliefs

  7. Survey of US speech pathologists re PEGs in dementia • 56% recommended PEG for pts with advanced dementia and dysphagia. • 58% did not think “PEG feeding improves QOL” • 11% would want a PEG for themselves • Sharp & Shega (2009). • Am J Speech-Lang Path, 2009;18: 222-30

  8. Marik et al (1999) Resuscitation, 42(3):197-201 US study: 640 physicians

  9. Why do doctors do bad stuff? • “family demand it” • “the patient demanded it” “I was hoping another doctor would say no” • Fear of legal action • Easier option to treat than to talk • Not putting themselves in the patient’s or family’s shoes

  10. Management of difficult decisions? Always act in the patient’s best interests, avoid doing harm Decide what treatment is medically indicated, if in doubt get second opinion Communicate your views - listen more and talk less - use the “D” word - don’t say “futile care” Seek agreement or take the burden of the responsibility Don’t ask stupid questions If no agreement - give the patient/family time to see for themselves - consider a trial with time or treatment limits Carefully document, follow process

  11. What about for the non-competent patient?

  12. What’s in the patient’s best interests? A substitute decision-maker must consider the best Interests: (a) The wishes of the patient; and (b) The wishes of any nearest relative or any other family members; and (c) The consequences to the patient if the treatment is not carried out; and (d) Any alternative treatment; and (e) The nature and degree of any significant risks associated with the treatment or any alternative treatment; and (f) Whether the treatment to be carried out is only to promote and maintain the health and well-being of the patient Section 38 Guardianship & Administration Act 1986

  13. What is advance care planning? … ‘a process, whereby a patient, in consultation with health care providers, family members and important others, makes decisions about his or her future health care, should he/she become incapable of participating in medical treatment decisions’. P Singer et al 1996 Most us will die after chronic illness, not from a sudden event Nearly half of us are not in a position to make our own decisions when we are near death Our family have a significant chance of not knowing our views without discussion

  14. RPC: building the evidence

  15. Randomised controlled trial English speaking, competent patients aged ≥ 80YO, admitted to hospital Intervention – ACP using the RPC model Primary outcome compliance with patients EOL wishes Wishes known & respected

  16. Randomised Controlled Trial (Aug 07 – Mar 08) 1044 files / patients reviewed 877 individual patients 309 patients - informed consent obtained (35%) 154 intervention, 155 control Excluded patients not competent, NESB, Prior ACP, expected to be discharged or die , no family, refused

  17. Deceased patients 56 patients (18%) died within 6 months 29 intervention, 27 control patients Patient’s wishes known and respected Intervention 86% Control 30% p < 0.001 No difference in mortality between groups Location of death Acute hospital: 16 in both groups ICU: 0 intervention pt, 4 control pt (p = 0.03)

  18. Impact of death on surviving relatives Death of a relative can cause significant anxiety, depression and post-traumatic stress Azoulay E, et al. Am J Resp CCM2005;171:987-94 Lautrette A, et al. N Engl J Med 2007;356:469-78 Wright AA, et al. JAMA 2008;300:1665-73. How do you quantify the impact? IES: Impact of Event Score HADS: Hospital Anxiety & Depression Score

  19. Deceased patients (56 patients)

  20. Deceased patients (56 patients)

  21. Deceased patients (56 patients)

  22. Deceased patients (56 patients)

  23. Patient / family feedback Discharge questionnaire Control patients- negative comments the doctors don’t listen I felt ignored and in the way They don’t want me as I am too old They wouldn’t speak to me, and kept discussing things with my family

  24. Survey of family of deceased patient Intervention group He had a very peaceful death, just as it should have been, & I would like to thank all staff for this. Even though we already knew what he wanted it was great to be able to talk about it so openly. _____________________________________________ Control group Mum didn’t want heroics. I was horrified to hear she received 45 minutes of CPR. She didn’t want it. All anyone had to do was ask. The doctors kept asking if dad should be resuscitated. I didn’t think they should keep asking, as they also told us it wouldn’t help him. It was obvious to us he was dying.

  25. Benefits of ACP ACP improves EOL care and patient satisfaction Empowers the patient NOW, not just in the future ACP assists family to: know patient wishes, be involved in ACP discussions More able to make decisions Less burdened Have less risk of stress, anxiety and depression Be more satisfied with quality of patient’s death

  26. 433,985 patients (1992-2005) ---> 18.3% survived Survival decreased with greater age or if from nursing home

  27. Test the hypothesis that changing the terminology from the negative “Do Not Resuscitate” to the positive “Allow Natural Death” J Med Ethics 2008

  28. Do bad things occur? 95 year old with dementia admitted with pneumonia Deteriorating patient with severe ID being considered for a PEG 87 year old nursing home patient with dementia and OHCA

  29. Want to know more? www.RespectingPatientChoices.org.au

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