Ethics at the End of Life: On the Frontier Alan Sanders, PhD

1. Ethics at the End of Life: On the Frontier Alan Sanders, PhD

2. New Stage of Life? Joanne Lynn, “Living Long in Fragile Health: The New Demographics Shape End of Life Care,” Improving End of Life Care: Why Has It Been So Difficult? Hastings Center Report Special Report 35, no. 6 (2005): S14-S18.

3. Theories of Termination/Withholding • Quality of Life • Patient Wishes – Autonomy • Benefits and Burdens of Treatment • When instructed: • Press #1 for “Quality of Life” • Press #2 for “Patient wishes – autonomy” • Press #3 for “Benefits and burdens of treatment”

4. The Frontier • Something may only look extraordinary (“out-of-the-ordinary”) • May not require an entirely new analysis or paradigm, but careful attention to who we are and where we have been

5. Left Ventricular Assist Device Rizzieri et al. “Ethical Challenges with left ventricular assist device as a destination therapy.” Philosophy, Ethics, and Humanities in Medicine, 3, 20, 2008.

6. Quality of Life Rizzieri et al. “Ethical Challenges with left ventricular assist device as a destination therapy.” Philosophy, Ethics, and Humanities in Medicine, 3, 20, 2008.

7. The Continuum for LVAD Goodlin, SJ. “Palliative Care in Congestive Heart Failure.’ Journal of the American College of Cardiology, 54, 5: 2009.

8. Case Mr. M. is a 48-year old male with a history of congestive heart failure and other complications. He is married and a father a 2 children. Due to his decline over the years, he has officially appointed his wife as his DPOAH and create a living will stating the he never wants to be kept alive on machines. He and his wife have discussed this in detail, considering his welfare and that of the family. Mr. M. is a candidate for LVAD-DT, but per the living will and discussions, he and wife refuse because he does not want to be kept alive by machines.

9. ERD - 56 • “A person has a moral obligation to use ordinary or proportionate means of preserving his or her life. Proportionate means are those that in the judgment of the patient offer a reasonable hope of benefit and do not entail an excessive burden or impose excessive expense on the family or the community.” • Primary intention vs. secondary intention or foreseen consequences • Unfortunately sometimes referred to as direct vs. indirect

10. Intention, Action, and Circumstances • The family of an actively dying patient with metastatic lung cancer asks that he be removed from ventilation, knowing he will only survive for a few hours without it. • The 48-year-old man elects not to have LVAD DT because he does not want to be a burden to the family. • A daughter in line for a large inheritance asks that her father be removed from ventilation, saying he never wanted to live like this. He is elderly but has a very good chance of recovering and returning to baseline.

11. Intention, Action, and Circumstances • A woman grabs a knife and stabs husband….. who is charging at her with a weapon trying to kill her……she claims self-defense. • A woman grabs a knife and stabs husband…..he beats her and the children, and, social workers and police are not protecting them….she claims self-defense. • A woman grabs a knife and stabs husband…no evidence of abuse, suspicion that she is seeing someone else, husband had large life insurance policy…..she claims self-defense.

12. Moving Forward • Decision-making capacity • Understanding • Appreciation • Ability to process information rationally • Able to communicate • Grisso and Appelbaum. Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals. Oxford University Press, 1998. • Alert and oriented might be a necessary condition, but it is not sufficient

13. Four Basic Questions, Guidelines • Can the patient demonstrate the ability to communicate a choice? • “Have you made any decisions about your treatment options?” • Does the patient understand his or her medical condition and the relevant facts? • “Please tell me in your own words what your doctor told you about your condition, his or her recommendation, the risks and benefits of the proposed intervention, and the alternatives.” • Does the patient understand the available options and the consequences of his or her decision? • “What do you think will happen to you if you are not treated? What do you think will happen if you are treated? Why do you think your doctor has recommend (x) to you?” • Is the decision based on reasoning consistent with the patient’s values/ preferences? • “How did you reach your decision? What factors were important to you in reaching the decision?” Make sure the conclusions follow logically from the premises.

14. Cautions • Does not always require a psyc consult • Recognize that specific physical or mental diagnoses, e.g., schizophrenia, stroke, depression, or Alzheimer’s do not necessarily mean that a patient lacks capacity to make a specific decision. • The greater the risk of the intervention, the more important to ensure that patients have capacity before accepting their decision. • Religious and Cultural Considerations

15. Other Items • From last webinar • The family meeting • Screening tools • Palliative care interventions • Ethics consultations • Pain management and withdrawal protocols • Moral Distress (potential upcoming topic) • POLST (potential upcoming topic) • Highly debated • Increase in legalizing physician-assisted suicide? • Issues of cooperation

16. A Larger Question? Justice? Joanne Lynn, “Living Long in Fragile Health: The New Demographics Shape End of Life Care,” Improving End of Life Care: Why Has It Been So Difficult? Hastings Center Report Special Report 35, no. 6 (2005): S14-S18.

17. Justice as Resource Allocation • Comparing Apples to Apples: • Health care as a percentage of GDP • End-of-life care as a percentage of healthcare expenditures • Not at the Bedside: • How does Mr. M’s LVAD in room 201 affect Mrs. A’s pacemaker in room 305? Or, 17-year-old Sallie’s access to education loans? Or, baby John’s WIC program……….

18. Resource Allocation: Appropriate utilization vs. Rationing • “In health care, geography is destiny” • Types of treatment • Medically necessary • Preference sensitive • Supply sensitive • Reform the way we deal with chronic illness

19. Justice as Access How “Hot Spotting” Cut Health Care Costs by 50% • One doctor in Camden, New Jersey, Jeffrey Brenner, used data to map “hot spots” of health care high-utilizers—one patient had gone to the hospital 113 times in a year—and found a better, cheaper way to treat these costly patients through collaborative care. Brenner’s team was able to reduce hospital visits and costs by 40 to 50 percent. Short video at: http://www.rwjf.org/en/about-rwjf/newsroom/features-and-articles/Brenner11.html • Atul Gawande, “The Hot Spotters: Can We lower medical costs by giving the neediest patients better care?” January, 24, 2011 TheNew Yorker

20. A Moral AND Business Imperative?Social Justice ERD #3 • In accord with its mission, Catholic health care should distinguish itself by service to and advocacy for those people whose social conditions puts them at the margins of our society and makes them particularly vulnerable to discrimination… poor… uninsured and underinsured... elderly… those with incurable diseases… mental or physical disabilities… same right to life and to adequate health care as all other persons.