Presented at Kansas City University of Osteopathic Medicine 10/27/15 in Lecture Series in Bioethics. See live presentation here: https://www.youtube.com/watch?v=Dr3g3PeVKeo

1. When stakes are high
and emotions run strong:
Ethical dilemmas at the
End of Life
October 27, 2015
Andi Chatburn, D.O., M.A.
Palliative Care Physician
Medical Director for Ethics, Providence Health Care

2. www.providence.org/ethics

3. Objectives
• Introduce the scope of Palliative Care and Hospice
Care and ways they intersect
• Discuss the common “every day ethics” that arise in
caring for patients and families at the end of life
• Examine the end-of-life experience from patient and
family perspectives, discussing implications for
physicians
• Analyze cases where ethical principles and values
conflict in serious illness and at the end of life.
• Note how humanities and self-reflection are
important tools in educating whole-person
physicians

4. Reminder regarding Cases
• Cases are based on actual clinical experiences.
Please respect the privacy and confidentiality
of the actual patients and families behind the
de-identified cases.
• The cases presented may not include all the
information you may want in order to make
your recommendation.

5. Nothing to disclose

6. When it’s personal, all bets are off
Sam Caplet “Don’t Let Go”

7. U.S. Army

8. Grayerbaby

9. Cagle

10. Common Ethical Dilemmas
at the End of Life
• Withholding and Withdrawing medical interventions
– Code Status and Unilateral DNAR
– Artificial Hydration & Nutrition
– Turning off ICD or much less commonly, pacemaker
– When to stop chemo/XRT?
– Mechanical Ventilation
• Surrogate Decision Makers
• Disagreement between patient/family & medical
teams
• Unique religious preferences at end of life
• Non-Beneficial or Futile medical interventions

11. Providence Model for Ethics
Clinical Integrity Beneficence
Autonomy
Justice &
Non-Maleficence

12. The Providence Model
Promote:
• Honesty in representing right professional
practices and delivery of health care
• Dependability in delivering care that benefits
patients medically
• Fairness to patients in their contexts
• Accountability to the legitimate interests of
others in light of justice
Kockler, N. Seeing Ethics Consultaitons for the First Time: Disclosure Models, Analytic
Design, and Ehtical Decision-Making. ©2014 –Nicholas J. Kockler

13. Ethical Decision-Making Model
Clinical Integrity
Beneficence
Autonomy
Justice &
Nonmaleficence

14. Clinical Integrity
Beneficence
Autonomy
Justice &
Nonmaleficence
Therapeutic relationship between
patient and provider
&
Narrative

15. Clinical Context
 Acute  Rescue, Fix
 Chronic Maintain, Manage
 Palliative Alleviate, Enhance QOL
 Life-Sustaining Prolongation of
biological life
 Futile  Non-Beneficial
or harmful

16. Ms. C
• 88 year old woman
• Admitted to hospital for combativeness, not
eating
• Advanced Dementia, <7 words
• Not eating, losing weight
• Maximally Cachectic, 87 lb

17. Clinical Integrity Beneficence
Autonomy
Justice &
Non-Maleficence

18. Clinical Integrity-
My relationship with my profession
• How do we make a care plan when we are still
uncertain about the diagnosis or prognosis
but need to act now?
• What care options should be offered?
• What should we do when the patient’s or
family’s goals seem inconsistent with
traditionally recognized goals of care?
• How do I resolve professional issues, such as
truth-telling, coercion, or conflicts of interest?

19. Clinical Integrity Beneficence
Autonomy
Justice &
Non-Maleficence

20. Ms. C
• 88 year old woman
• Ms. P is lifelong devout Catholic
• 3 daughters, 2 sons
• Widowed

21. How does Ms. C Express her
Autonomy?
• Patient Self Determination Act 1991
• Advance Directives
– Durable Power of Attorney for Health Care
– Living Will
– Conversations with family
– POLST / TPOPP

22. Ms. C
• Has an advance directive
• Named 3 of her 5 children as joint DPOA-HC
• Section on Artificial Hydration and Nutrition
(AHN) has 2 boxes to be checked:
– I would want Artificial Hydration and Nutrition
– I would not want Artificial Hydration and Nutrition

23. Ms. C
– I would want Artificial Hydration and Nutrition
– I would not want Artificial Hydration and Nutrition
• Neither box is checked
• Default in fine print at bottom of form states
that if neither box is checked, default is to give
Artificial Hydration & Nutrition

24. Ms. C
• 5 children
• Oldest Daughter in Maryland
• 2 sons live within 1 hour
• Youngest daughter is caregiver
• Children are split on what to do
• 3 of the 5 are listed as joint DPOAs

25. Autonomy-
My relationship with the patient
• Does the patient understand what’s wrong?
• What does my patient think is a good outcome?
• What is my patient’s cultural, religious, or ethnic
point of view?
• Can my patient make decsions?
• Can my patient participate in a complex care plan
or follow-up plan?
• Will my patient engage in the care plan?
• What are my patient’s goals and aspirations?
• What/Who are my patient’s support system?

26. Clinical Integrity Beneficence
Autonomy
Justice &
Non-Maleficence

27. Beneficence-
My relationship with the outcomes
• Am I fixing what’s wrong?
• Am I effectively managing a disease process?
• Am I appropriately managing my patient’s last
days?
• Am I simply delaying the inevitable?
• Am I causing harm to my patient? Or am I
worried I’m causing more harm than good?

28. www.choosingwisely.org

29. You‘re sick. It’s serious.
http://www.geripal.org/2011/02/youre-sick-its-serious.html

30. Palliative Care
Palliare (Latin): to cloak, comfort

31. Palliative Care
• Who?
– Anyone with a serious illness
• What?
– Pain and symptom relief
– Psychosocial support
• Goal?
– Find out what matters most
– Improve Quality of Life

32. The Disease Spectrum
http://www.med.umich.edu/geriatrics/patient/palliative-faq.htm

33. Hospice v. Palliative Care

34. Clinical Integrity Beneficence
Autonomy
Justice &
Non-Maleficence

35. Justice & Nonmaleficence-
My relationship with others
• Do I owe my patient’s family something?
• Do I owe my colleagues something?
• Is my patient at risk for being hurt, and if so do I
have an obligation to prevent harm?
• Can I explain the protections in place, or the lack of
protection?
• Are there conflicts of interest that could harm my
patient or someone else?
• Am I being a good steward of resources?
• Do I owe society or the community something?
• Do I owe my employer or its sponsors something?

36. Access to Primary Palliative Care
Communication about treatment options &
pain and symptom management that
happens between a patient and their
regular doctor
Conversation should be built in to regular
visits for any patient with serious illness

37. Changing medical attitudes
about death
• Death is NOT a failure of the physician
• Death as a natural part of life
• Goals of Medicine: prevent an untimely death
• Responsible medical spending and social
justice
– Bankruptcy is not infrequent in families of patients
that have extended hospital stays in the last 3
months of life

38. Choosing Wisely Campaign- AAHPM

39. Support for Palliative Care via
Choosing Wisely: Social Justice
• American College of Emergency Physicians
– Don’t delay engaging available hospice and palliative care
services in the emergency department for patients likely to
benefit
• Society of Gynecologic Oncology
– Don’t delay basic level palliative care for women with advanced
or relapsed gynecologic cancer, and when appropriate, refer to
specialty level palliative medicine
• American Society of Clinical Oncology
– Don’t use cancer-directed therapy for solid tumor patients with
… low performance status, no benefit from prior evidence-
based interventions… and no strong evidence supporting the
clinical value of further anti-cancer treatment.
• AMDA & American Geriatrics Society
– Don’t insert PEG tubes in individuals with Advanced Dementia

41. Common Reasons for Specialty
Palliative Care Consult
Symptoms
• Uncontrolled pain
• Nausea
• Constipation
• Dyspnea
• Fatigue
• Loss of appetite
• Depression
• Agitation/Delirium
Goals of Care
• Family communication
• Guidance with complex
treatment choices
– Feeding Tube?
– Code Status?
– Surgical Intervention?
– When to stop dialysis?
• Emotional and Spiritual
Support

42. Back to Ms. C
Sam Caplet “Don’t Let Go”

43. Should a Feeding Tube be Placed?
• Would this be Ms. P’s most likely desire?
• Who decides?
• Would Tube Feeds be clinically appropriate?
• What would the family see as a good
outcome?

44. Ms. C- symptom managment
• Increasing agitation
• Grimacing/moaning
• Daughter at bedside states “no pain medicine”
• Already on antipsychotic medication for
agitation to avoid physical restraints in the
hospital
• Family’s story: 5th daughter that no one
mentions

45. Ethics of Pain Control
• Stigma of addiction v. pseudo addiction
• Side effect of somnolence
• Potential for high dose opiates at end of life
• High risk
– Potential for diversion of medications
• Doctrine of Double Effect
– Shortens life span? Does it matter?

46. Principle of Double Effect

47. Responding to Intractable
Terminal Suffering
Quill and Byock
• Terminal (Palliative) Sedation and
voluntary refusal of hydration and
nutrition ought to be more
commonly considered options
• Ought to be considered for all types
of suffering, not only physical pain
and symptoms
• Physicians should make sure the
request is not coming from pt having
undiagnosed depression or
symptoms that can be treated with
palliative measures.
Letter to the editor, Sulmasy et
al.
• Mistaken and dangerous impression
that there is consensus among
experts
• Agree that could be appropriate
therapy when performed in carefully
selected cases by palliative care
specialist
• Disagree that there is a wider range
of indications for terminal sedation.
• Unclear what sorts of suffering might
be an indication for terminal
sedation.
Quill TE, Byock IR. Responding to intractable terminal suffering: the role of
terminal sedation and voluntary refusal of food and fluids. Ann Intern
Med. 2000; 132: 408-414.
Sulmasy, Ury ,Ahronheim, Siegler, Kass, Lantos, Burt, Foley, Payne, Gomez,
Krizek, Pellegrino, Portenoy. Letters to the editor responding to Quill and
Byock. Ann Intern Med. 2000; 133(7): 560-562

48. Quill and Byock
“Medicine cannot sanitize dying or provide
perfect solutions for all clinical dilemmas.
When unacceptable suffering persists
despite standard palliative measures,
terminal sedation and voluntary refusal of
food and fluids are imperfect but useful
last-resort options that can be openly
pursued.”

49. Controversy at End of Life
• Physician Aid in Dying
– Oregon 1998
– Washington 2008
– Vermont May 2013
– Montana- 2009. (Baxter v. Montana)
• Physician right to challenge charge if prosecuted for
prescribing a medication intended for physician aid in dying
– California 2015
• Euthanasia
– Netherlands, Switzerland

50. Self Care
When you do the physically and
emotionally hard work of doctoring,
no matter which specialty,
it is important to find something that
nourishes your soul

51. Reference
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©2014 –Nicholas J. Kockler
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