Palliative Medicine Boot Camp: Ethical Issues

Rev. Thomas F. Bracken, Jr. D Min - Community LIFE, Pittsburgh, PA David Wensel, DO - Midland Care PACE, Topeka, KS

Learning Objectives

Address ethical questions that arise when treating the dying patient

To understand the impact of healthcare decisions

To provide a starting place for those wishing to explore the complex subject of death and dying

What’s Right?

Defining the End of Life and Declaring Death

Death is the point at which our vital physical functions ease. In past eras, human death was much easier to

define than it is now. When our heart or lungs stopped working, we died. Sometimes our brain stopped before our heart and

lungs did, sometimes after. But the cessation of these vital organs occurred

close together in time. “Life support technologies introduced in the 20th century have

produced a new kind of patient, one whose braindoes not function, but whose heart and lungs continue to work.”

A Good Death

Improving the end of life and advocating for a “good death” has become the mission of many dedicated individuals and organizations, and is

also a frequent subject of research and focus for policy improvements. 1

A Good Death

“…too many Americans die unnecessarily bad deaths—deaths with inadequate palliative support, inadequate compassion, and inadequate human presence and anxiety, loneliness, and isolation. Deaths that efface dignity and deny individual self-control and choice.”(Jennings B, Rundes T, D’Onofrio C, et al. Access to Hospice Care: Expanding Boundaries,Overcoming Barriers. The Hastings Center Report, 2003;33 (2):S3-4).

Many believe that failing to address the suffering of a patient with a terminal illness violates two of the main ethical principles behind health care: 5

• Providing help or benefit to a patient (beneficence) –Failing to relieve pain and other symptoms does not help the dying patient.

• Not harming a patient (non-maleficence) – Failing to relieve pain and other symptoms can actually harm a patient and the patient’s loved ones.

Pain Management

As a patient with a serious illness nears the end of life, symptoms, including pain, may intensify. A major part of symptom relief is the use of drugs to relieve pain, soothe anxiety, and encourage rest. Many of the ethical dilemmas surrounding hospice and palliative care stem from the use of pain-relieving drugs in terminally ill patients.

Questions about the importance of treating symptoms, the value of individual autonomy, and fears of addiction to narcotics all play a role in how people view pain management. 6

Withholding and Withdrawing Medical Treatment

When seriously injured or ill and approaching death, medical interventions may save or prolong the life of a patient. But patients and loved ones often face decisions about when and if these treatments should be used or if they should be withdrawn.

Most people die in hospitals and long term care facilities, and a majority of deaths in these settings involve withholding or withdrawing at least one of the medical treatments listed above. 7

Ethics 101

There are six steps in the analysis of any ethical problem.Lots of information that may provide partial

facts.Can stimulate strong emotional reactions.

1. Just The Facts

Get the story Straight: Gather all relevant information and make sure everyone has the same facts.The general checklist for data:A. Clinical informationB. Preferences of patientC. Advanced Directives/TPOPP

2. Identify the Ethical Problem

Is this ethical distress for the patient, family, decision maker, or caregivers

Is there an ethical dilemma

Is this an authority problem

Allow for emotion and encourage discussion

3. Use Ethical Approach

Principle of Double Effect is the most common approach to use The nature of the act is good and morally

neutralWe intend a good effect and not badThe good outweighs the bad effectIdentify which ethical principles are in conflict

4. Explore All Practical Alternatives

What should be done or can be doneUse imagination to enhance decisionThink more expansively about alternatives

5. Suggest Possible Course of Action

This is not the final decision It must be in agreement with all ethical

principles

6. Complete Documentation

Provide recommendationsDiscuss with family and patientDiscuss with medical team caring for them

The ethical decisions surrounding the major types of medical care at end of life are:

Resuscitation

Mechanical ventilation

Nutrition and Hydration

Kidney Dialysis

Antibiotic Treatments

Medically Futile

Palliative Sedation

Resuscitation

DNR orders might be issued for the following patients:

Patients for whom CPR may not provide benefit.

Patients for whom surviving CPR would result in permanent damage, unconsciousness, and poor quality of life.

Patients who have poor quality of life before CPR is ever needed, and wish to forgo CPR should breathing or heartbeat cease.

Mechanical Ventilation

Mechanical ventilation is the most common life support treatment withdrawn in anticipation of death. 8 Mechanical ventilation is such a common treatment at the end of life, that some care providers may regard mechanical ventilation as “death-delaying” rather than “life-prolonging.” Some patients become dependent on the ventilator or die while being treated.

Therefore, for some patients ventilation is considered a non-beneficial treatment that negatively affects patients by delaying natural death or requiring families and physicians to decide to withdraw treatment. 9

Nutrition and Hydration

Decisions about nutrition and hydration are among the most emotionally and ethically challenging issues in end of life care.

The main dilemma concerns the nature and social meaning attached to providing people with food and water.

principle of proportionality:

If a dying patient receiving nutrition and hydration suffers burdens that outweigh the benefit of extended life, artificial

nutrition and hydration may be ethically withheld or withdrawn – whether or not the patient will die as a result of this action.

Kidney Dialysis

The ethical challenges for dialysis withdrawal arise when stopping dialysis becomes an option patients want to consider.

Withdrawal can occur when patients are either:

capable of making decisions and decide to forgo dialysis

a written health care directive expresses a desire to discontinue dialysis

a health care agent considers discontinuation of dialysis the best course of action

or when the physician decides dialysis no longer beneficial.

Antibiotic Treatments

One ethical concern raised by public health professionals is that excessive use of antibiotics can contribute to bacteria that mutate and become resistant to treatments: 10

Public health professionals express concern that over-prescribing antibiotics may result in resistant bacteria that could be more harmful to future patients – particularly in light of evidence that antibiotics may not be effective for treating infection in terminally ill patients.

Medical Futility

Medically futile treatments are those that are highly unlikely to benefit a patient.

Ethical questions surrounding the concept of medical futility are:

whether medical futility can be defined at all

treatments that provide a smaller benefit may be eliminated

treatments will be labeled futile in order to save money

Palliative Sedation

Some ethical concerns about its use are:

The unknown effect palliative sedation may have on hastening death.

The potential for abuse of patients who are unconscious and cannot speak for themselves.

Use of palliative sedation with patients who either do not require such strong relief or whose suffering is compounded by emotional, psychological, or spiritual suffering.

How to value consciousness versus suffering.

How far people should go in an attempt to relieve pain and other uncomfortable symptoms.

ReferencesCenter for Bioethics University of Minnesota: Overview Ethics at End of Life

1. Jennings B. Rundes T. D’Onofrio C. et al. Access to hospice care:expanding boundaries, overcoming barriers. The Hastings Center Report, 2003; 33(2):S3-4. Available online at http://www.thehastingscenter.org/pdf/access_hospice_care.pdf. Accessed 10/7/04.

2. Steinhauser KE, Clipp EC, McNeilly M, et al. In search of a good death: observations of patients, families, and providers. Annals of Internal Medicine, 2000; 132:825-832.

3. Singer PA, Martin DK, Kelner M. Quality end of life care: patient’s perspectives. Journal of the American Medical Association, 1999; 281:163-168. 16

4. Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and Other Care Providers. Journal of the American Medical Association, 2000; 284:2476-2482.

5. Chrystal-Frances E. Palliative care: A discussion of management and ethical issues. Nursing Forum, 2003; 38(2):25-29.

6. Chrystal-Frances E. Palliative care: a discussion of management and ethical issues. (Said Another Way). Nursing Forum, 2003; 38(2):25-29.

7. Pendergast TJ, Luce JM. Increasing incidence of withholding and withdrawal of life support from the critically ill. American Journal of Respiratory and Critical Care Medicine, 1997; 155:15-20.

8. Singer GR. Disconnecting the ventilator: life saving or death delaying? Journal of the Florida Medical Association, 1997; 84(8):498-501.

9. Tomlinson T, Brody H. Sounding board: ethics and communication in Do-Not-Resuscitate orders. The New England Journal of Medicine, 1988; 318(1):43-46.

10. Marcus EL. Clarfield AM. Moses AE. Ethical issues relating to the use of antimicrobial therapy in older adults. Clinical Infectious Diseases, 2001; 33(10):1697-1705.

11. Jude JR, Elam JO. Fundamentals of Cardiopulmonary Resuscitation. Philadelphia: F.A. Davis Company; 1965:4.

12. LaDuke S. Terminal dyspnea & palliative care. AJN, 101(11):26-31, 2001 Nov.

13. Shee CD. Green M. Non-invasive ventilation and palliation: experience in a district general hospital and a review. Palliative Medicine, 2003; 17(1):21-26.

14. Cohen LM. Germain MJ. Poppel DM. Practical considerations in dialysis withdrawal: “To have that option is a blessing.” Journal of the American MedicalAssociation, 2003; 289(16):2113-2119.

Palliative Medicine Boot Camp: Ethical Issues

Rev. Thomas F. Bracken, Jr. D MinSenior Chaplain Community LIFE Pittsburgh, PA brackentf@upmc.edu

Rev. Bracken is the Senior Chaplain of Community LIFE and is a member of the ethics committees of several hospitals in the Pittsburgh area. He is also the Senior Pastor of Faith Community Christian Church in Pittsburgh. Rev. Bracken has served as a Chaplain for Teen Challenge and also serves as a Pennsylvania State Police Chaplain. He is the proud recipient of the Pastor of the Year: Servants Heart Award 2013.

Palliative Medicine Boot Camp: Ethical Issues

David Wensel DO, FAAHPMMidland PACE Topeka Kansasdwensel@midlanddcc.org785-289-3539

Dr. Wensel is the Medical Director at Midland Care Connection in Topeka, KS. He actively teaches and focuses on palliative medicine and end-of-life care, with a primary focus on suffering in all its domains. He provides education to nursing students, medical students, residents, APRN students as well as pharmacy students. He is the past chair of the membership and communities committee for the American Academy of Hospice and Palliative Medicine and serves on the exam committee for the Hospice Medical Directors Certification Board. He also currently co-chairs the NPA End of Life Workgroup with Thomas Smith.