Ethics at the End of Life and Introduction to Hospice and Palliative Care for Medical Students. Exploration of feeding tubes, code status, when to stop chemo. Discusses cases and the ethical principles and values that are the basis for disagreement in care and what to do when there is a conflict in ethical principles themselves. Also provides an introduction to decisions of last resort including physician aid in dying, palliative sedation and voluntary refusal of nutrition and hydration.

1. ETHICS AT THE END OF LIFE &
INTRO TO HOSPICE AND PALLIATIVE
CARE FOR MEDICAL STUDENTS
IDIS 110 Ethics for Physicians- KCUMB
Andi Chatburn, D.O., M.A.
Fellow, Hospice and Palliative Medicine
University of Kansas Medical Center &
Kansas City Hospice and Palliative Care

2. Objectives
• Introduce the scope of Palliative Care and Hospice Care
and ways they intersect
• Discuss access to Hospice and Palliative Care as
important and a basic human right & a social justice issue
• Discuss common reasons for Palliative Care Consult or
Hospice referral and common “every day ethics” that arise
• Examine the end-of-life experience from patient
perspectives, discussing implications for physicians
• Analyze cases where ethical principles and values conflict
in serious illness and at the end of life.
• Discuss how humanities and self-reflection are important
tools in educating whole-person physicians

3. 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
• Ms. P is lifelong devout Catholic
• 3 daughters, 2 sons
• Widowed

4. Ms. C
• Has an advance directive
• 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
• Neither box is checked
• Default in fine print at bottom of form states that if neither
box is checked, default is to give AHN
• Children are split on what to do, and ALL are listed as joint
DPOAs

5. Mr. P
• 62 yo gentleman with Advanced Multiple Myeloma
• Admitted to Hospice House for pain out of control
• Multiple pelvis, Lumbar spine, Femoral bony lesions
• Pain Regimen
• Intrathecal Pump
• Fentanyl Patch
• Delirium
• Wife says “just make him sleep so he’s comfortable,
please”
• Son says “don’t give him any more pain medication, it’s
addicting”

6. Principles and Values
Beauchamp and Childress:
• Autonomy
• Beneficence
• Nonmaleficence
• Justice
Others:
• Ethic of care- Nel Noddings
• Capabilities Approach- Martha Nussbaum
• Religious, Spiritual, Cultural diversity
• Re-framing of medical cultural attitudes toward death

7. Palli-what?
Palliare (Latin): to cloak, comfort

8. 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

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

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

11. Hospice v. Palliative Care

12. Both: Interdisciplinary Team Approach
• Nurses
• Patient
• Family & Friends
• Social Workers
• Chaplains
• Home Health Aids
• Physicians
• Massage Therapists
• Music & Art Therapists
• Pharmacists

13. Hospice Care: Medicare Benefit
Certification:
If your disease or combined comorbid serious illnesses
take its [their] natural course,
then your expected prognosis is likely to be 6 months or
less.
Not a sentence of 6 months but a comparison of the patient
to other typical patients with similar disease stage

14. ePrognosis

15. That’s great, but where?
Palliative Care
• Hospital Consult Team
• Outpatient Clinic
• Palliative Home Health
• Home
• Nursing Facility
Hospice
• Home
• Nursing Home
• Hospice House
• Hospital Room/Wing
• Outpatient Clinic

16. 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

17. Changing medical attitudes about death
• Death is NOT a failure of the physician
• Death as a natural part of life
• Saving living vs. saving life
• 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
ChoosingWisely.org

18. Choosing Wisely Campaign- AAHPM

20. 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

21. 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

22. WHICH ETHICAL
PRINCIPLES AND
VALUES APPLY?
Break out into discussion
groups of 4-6

23. 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

24. 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?

25. Most Common Ethical Dilemmas
• 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
• What about when patient or family and medical teams
disagree?
• Religious preferences at end of life
• Non-Beneficial or Futile medical interventions

26. Who decides?
•Surrogate decision making
•What about the
“unbefriended/unrepresented”
patient?
•When ought a guardian be
appointed?
•Medical Paternalism v. Autonomy in
unilateral decisions

27. CASE 1

28. Ms. C
• 88 year old woman
• Admitted for combativeness, not eating
• Advanced Dementia, <7 words
• Not eating, losing weight
• Maximally Cachectic, 87 lb
• Ms. P is lifelong devout Catholic
• 3 daughters, 2 sons
• Widowed

29. Ms. C
• Has an advance directive
• 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
• Neither box is checked
• Default in fine print at bottom of form states that if neither
box is checked, default is to give AHN
• Children are split on what to do, and ALL are listed as joint
DPOAs

30. Should a Feeding Tube be Placed?
• Would this be Ms. P’s most likely desire?
• Withholding vs. Withdrawing
• Who decides?
• Advance Directive and Durable Power of Attorney
• Would Tube Feeds be in Ms. P’s best interest?
• Non-maleficence vs. Beneficence
• What would the family hope to gain?

31. CASE 2

32. Mr. P
• 62 yo gentleman with Advanced Multiple Myeloma
• Admitted to Hospice House for pain out of control
• Multiple pelvis, Lumbar spine, Femoral bony lesions
• Pain Regimen
• Intrathecal Pump
• Fentanyl Patch
• Delirium
• Wife says “just make him sleep so he’s comfortable,
please”
• Son says “don’t give him any more pain medication, it’s
addicting”

33. Doctrine of Double Effect
• Mr. P
• Increasing Pain
• Increasing doses of opiates, benzodiazepines
• Delirium complicating clinical picture
• Doctrine of Double Effect
• Opiates may shorten life span
• If using appropriately to treat pain, this is an acceptable side effect
• Proportionality
• Pain medication doses should be proportional to the pain present

34. Mr. P Continued…
• Palliative Sedation
• Indication: pain and symptoms not able to be controlled even with
quality palliative care (aggressive pain and symptom management)
• Sedation for pain and symptoms seen by most physicians as
different from elective sedation to death
• Methods
• Intermittent sedation with daily sedation vacations vs.
• Continuous sedation until death
• Doctrine of Double Effect
• Unable to eat if sedated

35. 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

36. Personhood, Suffering and Meaning
“In terminally ill persons, requests for physician-
assisted death are infrequently triggered by
unrelieved pain alone but more commonly
result from a combination of physical symptoms
and debility, weakness, lack of meaning, and
weariness of dying… [s]uffering can arise from
a sense of impending disintegration of one’s
person or a loss of meaning that may have little
to do with uncontrolled physical symptoms” –
Quill & Byock

37. 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.”

38. Controversy at End of Life
• Palliative Sedation
• Voluntary cessation of food/water intake
• 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
• Euthanasia
• Netherlands, Switzerland

40. SELF CARE

41. 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