Ethical Palliative Care and End of Life Issues A. Reed Thompson, M.D. Palliative Care Program University of Arkansas for Medical Sciences Central Arkansas Veterans Healthcare System

Objectives To present the major ethical concerns in Palliative Care To help define the ethical issues in Palliative Care using case studies

Are Palliative Care and Hospice Care Different?

Defining Palliative Care Veterans Healthcare System 2004 Palliative Care is a broad term that includes hospice care as well as other care that emphasizes symptom management in persons with life-limiting disease but is not restricted to persons near the end of life.

More on Defining Palliative Care A new specialty of medicine that uses an interdisciplinary team to manage patients with an advanced illness, in whom the goal of care is symptom control rather than disease control.

More on Defining Palliative Care The care of patients who are in an advanced stage of an incurable illness.

Hospice Care Definition A philosophy of medical care that emphasizes symptom management in persons with life-limiting disease and with a primary focus on quality of life.

Hospice Definition Hospice is a interdisciplinary program of palliative and supportive services funded by third-party payers that is provided both in the home and in institutional settings for persons with weeks or months to live so that they may live as fully and as comfortably as possible.

Dichotomy Division into two mutually exclusive, opposed, or contradictory groups Dictionary.com

That palliative care and hospice are fundamentally different A False Dichotomy That palliative care and hospice are fundamentally different

Palliative Care & Hospice Care: What do they share? Philosophy of care Interdisciplinary Team The honoring of patient preferences Focus on symptom control rather than disease control

Palliative Care & Hospice Care: What do they share? Clinical expertise in symptom control Addressing of multiple domains of suffering Bereavement care Provided in institutional and home settings

Palliative Care & Hospice Care: What don’t they share? Payment mechanism

Palliative Care & Curative Care Another False Dichotomy? That Palliative Care and Curative Care are fundamentally different

Palliative Care & Curative Care Really a dichotomy? Cannot separate disease control and symptom control

Palliative Care & Curative Care A True Dichotomy Palliative Care & Curative Care are fundamentally different

Dichotomy Division into two mutually exclusive, opposed, or contradictory groups Dictionary.com

Palliative Care & Curative Care Why a dichotomy? Primary goal of care is different

Questions/Comments?

Ethical Issues in Palliative Care

Webster’s Online Dictionary Ethics The discipline dealing with what is good and bad and with moral duty and obligation Webster’s Online Dictionary

Medical Ethics A system of moral principles that apply values and judgments to the practice of medicine. As a discipline, medical ethics encompasses its practical application in clinical settings. Wikipedia.com

Morals (from the Latin “moralitas” - manner, character, proper behavior Morality is the differentiation among intentions, decisions, and actions between those that are good (or right) and bad (or wrong). Webster’s Online Dictionary

Ethical Issues in Palliative Care Autonomy/Beneficence Advance directives/surrogacy DNR/POLST Withdrawing/withholding life support Double effect

Ethical Issues in Palliative Care Medical futility Informed consent Responsible resource allocation Euthanasia/Physician Assisted Suicide Truth-telling

Ethical Issues in Palliative Care Honoring patient preferences Non-abandonment Sedation for intractable symptoms Competency/decisional capacity

Competency vs Capacity Decided by a court/judge Typically chronic alteration Expected to permanent Capacity (decision-making capacity) Decided by physicians Typically acute in onset Fluctuates

Arkansas Rights of the Terminally Ill or Permanently Unconscious Act (ARTIPUA) Arkansas Act § 20-17-201 (1987) Addresses patients only in one of these two conditions Living Will Healthcare proxy is appointed Two physicians are required to declare that the patient does not have decision-making capacity

Durable Power of Attorney for Health Care Arkansas Act § 20-13-104 (1999) May appoint a durable power of attorney for health care in addition to a health care proxy Durable power of attorney for health care can all make decisions except those covered by ARTIPUA

P.O.L.S.T. Physician orders for life-sustaining treatment An type of advance directive signed by patient and physician Travels with the patient across healthcare venues Helps prevent unwanted medical interventions, such as CPR Arkansas does not have P.O.L.S.T., but over 30 states have adopted some form of it

Organizational Ethics Definition The ethics of an organization, and how an organization ethically responds to an internal or external stimulus.

Organizational Ethics Components Written code of ethics and standards Ethics training to executives, managers, and employees Availability for advice on ethical situations Systems for confidential reportings

Questions/Comments so far?

Approaches to Problem Solving

Problem solving approaches Utilitarian - consequentalist Deontological - intentionalist

Approaches to care of patients with advanced illness Hubristic: Traditional medicine Nihilistic: Hospice Hegelian: Palliative Care Thesis Synthesis Antithesis Adapted from Amos Bailey, M.D. Birmingham VA

Break Time

TEST Ethics in Hospice/Palliative Care

Objective To help apply knowledge of ethics in your hospice/palliative care practice

1. All the following statements about ethical issues related to hospice and palliative care are true except which one?   a. Increasing religious and cultural diversity requires careful attention to the values, needs, and concerns of each patient. b. When news of a life-limiting illness affects a patient’s ability to make decisions, the physician should help the patient articulate his or her beliefs, values, and goals. c. Physicians are obligated to honestly and compassionately tell patients as much as they want to know about their diagnosis and prognosis. d. Patients are obligated to participate in research projects that may improve hospice and palliative care for others.

1. All the following statements about ethical issues related to hospice and palliative care are true except which one?   a. Increasing religious and cultural diversity requires careful attention to the values, needs, and concerns of each patient. b. When news of a life-limiting illness affects a patient’s ability to make decisions, the physician should help the patient articulate his or her beliefs, values, and goals. c. Physicians are obligated to honestly and compassionately tell patients as much as they want to know about their diagnosis and prognosis. d. Patients are obligated to participate in research projects that may improve hospice and palliative care for others.

2. Which of the following is not considered an ethical principle used to guide patient care in hospice and palliative medicine?   a. Serving the patient’s well-being b. Sound financial choices c. Avoiding harm d. Fairness and justice

2. Which of the following is not considered an ethical principle used to guide patient care in hospice and palliative medicine?   a. Serving the patient’s well-being b. Sound financial choices c. Avoiding harm d. Fairness and justice

Which one of the following statements is true? 3. Which one of the following statements is true?   a. A formal decision-making process guarantees that an ethically correct decision will be made. b. The principles of beneficence, nonmaleficence, autonomy, and justice provide clear-cut guidelines for making ethical decisions. c. A principle-based framework provides guidance about the ranking of principles when they appear to conflict with one another. d. Ethical principles are general values that point to relevant considerations, such as patient self-determination.

Which one of the following statements is true? 3. Which one of the following statements is true?   a. A formal decision-making process guarantees that an ethically correct decision will be made. b. The principles of beneficence, nonmaleficence, autonomy, and justice provide clear-cut guidelines for making ethical decisions. c. A principle-based framework provides guidance about the ranking of principles when they appear to conflict with one another. d. Ethical principles are general values that point to relevant considerations, such as patient self-determination.

4. In the hospice and palliative care setting, which of the following is an example of the principle of nonmaleficence?   a. Discussing a patient’s feelings about confronting death with your neighbor b. Providing heavy sedation at the family’s request c. Avoiding the prescription of high dosages of opioids d. Withdrawing artificial nutrition when a patient is actively dying with rattling secretions

4. In the hospice and palliative care setting, which of the following is an example of the principle of nonmaleficence?   a. Discussing a patient’s feelings about confronting death with your neighbor b. Providing heavy sedation at the family’s request c. Avoiding the prescription of high dosages of opioids d. Withdrawing artificial nutrition when a patient is actively dying with rattling secretions

5. Whose input is most important when determining a patient’s decision-making capacity?   a. The patient’s physician b. The administrative law judge c. The patient’s psychiatrist (in conjunction with the patient’s spouse) d. The patient’s attorney

5. Whose input is most important when determining a patient’s decision-making capacity?   a. The patient’s physician b. The administrative law judge c. The patient’s psychiatrist (in conjunction with the patient’s spouse) d. The patient’s attorney

6. Which of the following conditions must be met before a patient is considered not to have capacity to make healthcare decisions?   a. A judge rendered a finding of incompetency. b. The patient cannot recite the information presented. c. The patient does not have the ability to understand the implications of a decision. d. The patient does not have the verbal ability to communicate a decision.

6. Which of the following conditions must be met before a patient is considered not to have capacity to make healthcare decisions?   a. A judge rendered a finding of incompetency. b. The patient cannot recite the information presented. c. The patient does not have the ability to understand the implications of a decision. d. The patient does not have the verbal ability to communicate a decision.

7. If a physician is morally opposed to a terminally ill patient’s treatment choice, such as instituting mechanical ventilation at the very end of life, the physician should do which of the following?   a. Help the patient find another physician who is comfortable implementing the patient’s choice. b. Call a meeting of the ethics committee. c. Attempt to convince the patient to make a decision the physician can support. d. Refuse to provide futile care for the patient.

7. If a physician is morally opposed to a terminally ill patient’s treatment choice, such as instituting mechanical ventilation at the very end of life, the physician should do which of the following?   a. Help the patient find another physician who is comfortable implementing the patient’s choice. b. Call a meeting of the ethics committee. c. Attempt to convince the patient to make a decision the physician can support. d. Refuse to provide futile care for the patient.

Which of the following statements is false? 8. Which of the following statements is false?   a. The patient’s relationship with family members should not be considered when making decisions about treatments. b. A thorough assessment of clinical, biographical, and cultural facts is the first step in making ethical decisions. c. Proposed treatments should be considered in terms of their affects on both the patient and the family. d. Ethical dilemmas may be nothing more than disagreements based on inadequate knowledge.

Which of the following statements is false? 8. Which of the following statements is false?   a. The patient’s relationship with family members should not be considered when making decisions about treatments. b. A thorough assessment of clinical, biographical, and cultural facts is the first step in making ethical decisions. c. Proposed treatments should be considered in terms of their affects on both the patient and the family. d. Ethical dilemmas may be nothing more than disagreements based on inadequate knowledge.

1 2 . 9. The patient is a 62-year-old woman with a long history of schizophrenia, who has lived on the street for 5 years while she was awaiting an opening in a state-supported apartment building, which she moved into a year and a half ago. The building manager sent her to the emergency room for an evaluation of a painful, odorous skin lesion on her chest. She was deemed to have capacity in the ED by 2 physicians (one a psychiatrist). She refused workup or treatment of a fungating breast lesion, presumed to be breast cancer, and was referred to hospice. She has no cognitive distortions or other thought abnormalities. She can logically argue why she wants to only use toilet paper and napkins to absorb the drainage from her breast and refuses to be given wound care. The odor distresses other residents. The hospice nurse wants to force wound care upon her to prevent eviction. At this point, what is the next step in helping this patient?   a. a. Debride her wound in her apartment to reduce the odor against her wishes. b. Commit her to a psychiatric unit. c.Try to find family to make decisions for her. d. d. Allow her to make her own decisions and potentially be evicted.

1 2 . 9. The patient is a 62-year-old woman with a long history of schizophrenia, who has lived on the street for 5 years while she was awaiting an opening in a state-supported apartment building, which she moved into a year and a half ago. The building manager sent her to the emergency room for an evaluation of a painful, odorous skin lesion on her chest. She was deemed to have capacity in the ED by 2 physicians (one a psychiatrist). She refused workup or treatment of a fungating breast lesion, presumed to be breast cancer, and was referred to hospice. She has no cognitive distortions or other thought abnormalities. She can logically argue why she wants to only use toilet paper and napkins to absorb the drainage from her breast and refuses to be given wound care. The odor distresses other residents. The hospice nurse wants to force wound care upon her to prevent eviction. At this point, what is the next step in helping this patient?   a. a. Debride her wound in her apartment to reduce the odor against her wishes. b. Commit her to a psychiatric unit. c.Try to find family to make decisions for her. d. d. Allow her to make her own decisions and potentially be evicted.

10. Usual palliative care communication with a patient would include all of the following except   a. revisiting goals of care after major events b. addressing resuscitation and desirability of continuation of pacemaker, ICD, CRT, and LVAD support c. social justice issues of prolonged hospitalization d. decision making surrounding disease-altering therapies such as ICD, CRT, and transplantation

10. Usual palliative care communication with a patient would include all of the following except   a. revisiting goals of care after major events b. addressing resuscitation and desirability of continuation of pacemaker, ICD, CRT, and LVAD support c. social justice issues of prolonged hospitalization d. decision making surrounding disease-altering therapies such as ICD, CRT, and transplantation

11. A 67-year-old widow has metastatic cervical cancer that is refractory to chemotherapy. She is "slow," according to her brother-in-law, who has cared for her since her husband died six years ago. The brother-in-law has signed medical power of attorney and insists that she not be informed that the chemotherapy has been unsuccessful. He asks that mock treatment be administered to keep up her hope. Which of the following is the most appropriate next step? a. Agree to administer mock treatment b. Ascertain what the patient knows and wants to know about her condition c. Consult the hospital attorney and ethics committee d. Question the validity of his medical power of attorney

11. A 67-year-old widow has metastatic cervical cancer that is refractory to chemotherapy. She is "slow," according to her brother-in-law, who has cared for her since her husband died six years ago. The brother-in-law has signed medical power of attorney and insists that she not be informed that the chemotherapy has been unsuccessful. He asks that mock treatment be administered to keep up her hope. Which of the following is the most appropriate next step? a. Agree to administer mock treatment b. Ascertain what the patient knows and wants to know about her condition c. Consult the hospital attorney and ethics committee d. Question the validity of his medical power of attorney

12. Which of the following issues is often associated with requests for physician-assisted suicide?   a. Pain requiring high dosages of morphine b. Antidepressant therapy c. Fatigue on the part of hospice staff d. Feelings of being a burden on family

12. Which of the following issues is often associated with requests for physician-assisted suicide?   a. Pain requiring high dosages of morphine b. Antidepressant therapy c. Fatigue on the part of hospice staff d. Feelings of being a burden on family

13. Which of the following is least important when a patient’s identified surrogate makes healthcare decisions?   a. The patient’s advance directive b. The surrogate’s financial concerns c. The patient’s values and preferences d. Coherence with the patients’ other life choices

13. Which of the following is least important when a patient’s identified surrogate makes healthcare decisions?   a. The patient’s advance directive b. The surrogate’s financial concerns c. The patient’s values and preferences d. Coherence with the patients’ other life choices

14. A 58-year-old Asian woman is diagnosed with breast cancer 14. A 58-year-old Asian woman is diagnosed with breast cancer. The husband asks the nurse to inform him about his wife’s condition but to withhold the diagnosis from his wife. The nurse should :   a. Refuse to provide care for the patient unless allowed to fully disclose all information to her b. Ask the patient what she knows and wants to know about her condition c. Present pertinent information to the patient and family members concurrently in a family conference d. Explain that, in the , information about diagnosis and prognosis is always fully disclosed to the patient.

14. A 58-year-old Asian woman is diagnosed with breast cancer 14. A 58-year-old Asian woman is diagnosed with breast cancer. The husband asks the nurse to inform him about his wife’s condition but to withhold the diagnosis from his wife. The nurse should :   a. Refuse to provide care for the patient unless allowed to fully disclose all information to her b. Ask the patient what she knows and wants to know about her condition c. Present pertinent information to the patient and family members concurrently in a family conference d. Explain that, in the , information about diagnosis and prognosis is always fully disclosed to the patient.

15. A 63-year-old man with multiple bone metastases from advanced lung cancer is receiving home hospice care. You find him in agonizing pain despite having taken 800 mg of morphine sustained release (SR), 24 mg hydromorphone, and 600 mg gabapentin. He asks you to “just put me to sleep.” Which of the following is the most appropriate course of action?   a. Initiate therapeutic sedation with SC phenobarbitol. b. Explain that euthanasia is illegal. c. Increase the morphine SR to 1,000 mg twice a day. d. Move the patient into the inpatient unit and rotate the opioids.

15. A 63-year-old man with multiple bone metastases from advanced lung cancer is receiving home hospice care. You find him in agonizing pain despite having taken 800 mg of morphine sustained release (SR), 24 mg hydromorphone, and 600 mg gabapentin. He asks you to “just put me to sleep.” Which of the following is the most appropriate course of action?   a. Initiate therapeutic sedation with SC phenobarbitol. b. Explain that euthanasia is illegal. c. Increase the morphine SR to 1,000 mg twice a day. d. Move the patient into the inpatient unit and rotate the opioids

16. The patient from question 15 experiences some relief from multiple interventions, but he becomes more confused and drowsy and still grimaces at times. His son, who lives out of town, comes to visit and is terribly distressed. He says that he is the patient’s power of attorney for health care, and he insists that you “get this over with.” What is the most appropriate response?   a. Initiate therapeutic sedation with SC phenobarbitol. b. Explain that euthanasia is illegal. c. Send in the Chaplain d. Assemble a meeting with team members and the patient’s family to discuss the patient’s goals of care.

16. The patient from question 15 experiences some relief from multiple interventions, but he becomes more confused and drowsy and still grimaces at times. His son, who lives out of town, comes to visit and is terribly distressed. He says that he is the patient’s power of attorney for health care, and he insists that you “get this over with.” What is the most appropriate response?   a. Initiate therapeutic sedation with SC phenobarbitol. b. Explain that euthanasia is illegal. c. Send in the Chaplain d. Assemble a meeting with team members and the patient’s family to discuss the patient’s goals of care

17. The patient from question 15 is at home and has had 3 weeks of excellent pain relief and good mental clarity but develops brain metastases with frequent seizures and severe agitated delirium despite multiple medication changes. The son again asks you to help his father die peacefully. What is the best response?   a. Initiate therapeutic sedation with midazolam. b. Explain that euthanasia is illegal. c. Increase the opioid dosage by 50%. d. Ask for a Neurology Consult

17. The patient from question 15 is at home and has had 3 weeks of excellent pain relief and good mental clarity but develops brain metastases with frequent seizures and severe agitated delirium despite multiple medication changes. The son again asks you to help his father die peacefully. What is the best response?   a. Initiate therapeutic sedation with midazolam. b. Explain that euthanasia is illegal. c. Increase the opioid dosage by 50%. d. Ask for a Neurology Consult

18. Which of the following statements is a misconception about palliative care?   a. Palliative care interventions usually result in hastening death. b. A central goal of palliative interventions is to improve a patient’s quality of life. c. No specific therapy is excluded from consideration as a palliative intervention. d. Palliative Care, like hospice, is a team effort

18. Which of the following statements is a misconception about palliative care?   a. Palliative care interventions usually result in hastening death. b. A central goal of palliative interventions is to improve a patient’s quality of life. c. No specific therapy is excluded from consideration as a palliative intervention. d. Palliative Care, like hospice, is a team effort

19. A patient with widespread adenocarcinoma of the colon with extensive liver and brain metastases demands an evaluation for a liver transplant. Which of the following responses is the best way to express your concern?   a. It would be a waste of precious resources to give this patient a new liver. b. The patient’s situation is hopeless and doesn’t deserve a new liver. c. Liver transplants are medically futile on such patients. d. The burdens of the surgery outweigh the benefits of the procedure for this patient.

19. A patient with widespread adenocarcinoma of the colon with extensive liver and brain metastases demands an evaluation for a liver transplant. Which of the following responses is the best way to express your concern?   a. It would be a waste of precious resources to give this patient a new liver. b. The patient’s situation is hopeless and doesn’t deserve a new liver. c. Liver transplants are medically futile on such patients. d. The burdens of the surgery outweigh the benefits of the procedure for this patient.

21. A 52-year-old terminally ill man on hospice with unrelieved pain asks his nurse for a prescription for a 3-month supply of secobarbital. In addition to calling for help from your team, what is the best response? a. Honor the request b. Listen to his concerns and document the conversation carefully. c. Get him a prescription for a 1-week supply of secobarbital and advise the patient to call for refills as needed. d. Attempt to determine the cause of the pain and treat it aggressively.

21. A 52-year-old terminally ill man on hospice with unrelieved pain asks his nurse for a prescription for a 3-month supply of secobarbital. In addition to calling for help from your team, what is the best response? a. Honor the request b. Listen to his concerns and document the conversation carefully. c. Get him a prescription for a 1-week supply of secobarbital and advise the patient to call for refills as needed. d. Attempt to determine the cause of the pain and treat it aggressively.

22. Which of the following is the most common reason that terminally ill patients ask for help in ending their lives? Depression Fear of loss of control Financial factors Non-pain symptoms e. Pain

22. Which of the following is the most common reason that terminally ill patients ask for help in ending their lives? Depression Fear of loss of control Financial factors Non-pain symptoms e. Pain

Case of A.T. A.T. is a 77 y/o man with advanced COPD has been in hospice 180 days. He qualified for hospice care based on Medicare ‘s admission guidelines, but he has been without any substantial decline. He is home bound and O2 dependant. He lives alone with friends helping with his groceries, but they are not too reliable. He is frequently found without food in the home. He has decisional capacity, and he refuses to move to assisted living.

Is it ethical to discharge A.T. from hospice ? Case of A.T. Is it ethical to discharge A.T. from hospice ?

Questions/Comments?