1. Compassionate Responses to Patient or Family Requests to Hasten Death © Copyright By Sarah Shannon Sarah E. Shannon, PhD, RN

2. Slide 2 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE Background Issues I Regardless of legality or personal views, dying and suffering patients – or their families and friends – will ask about hastening death. Even excellent palliative care will not eliminate all requests for assisted suicide. Despite important ethical and legal differences between withholding/withdrawing life-sustaining therapies and assisted suicide, clinical requests for both are often “present” in similar ways.

3. Slide 3 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE Background Issues II Current research indicates that around 80% of all deaths in acute care institutions are preceded by an active decision to stop or not start a life-sustaining therapy. Many patients are not able to participate in health care decision making at the point that the difficult choices about life-sustaining therapies must be made.

4. Slide 4 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE Background Issues III Families often act as surrogate decision-makers and, at some point, most of us will have to face making difficult choices for a dying loved one. Many Americans fear a painful and abandoned death. White, middle-class Americans tend to fear receiving too much therapy at the end of life, while groups that have suffered discrimination in access to health care tend to fear being “given up on.” Clinicians need to know how to respond to requests for hastened death respectfully and competently.

5. Slide 5 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE What Patients Actually Say I “I don't know how long I am going to put up with this nonsense.” “She didn't want any of this.” “If I get to the point where I can't stand this, you're going to be there for me... aren't you?” “I want to be ready if this gets unbearable.”

6. Slide 6 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE What Patients Actually Say II “Please go away!” “What is the point of doing all this?” “Please let me die.” “Please help me to die.”

7. Slide 7 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE Five Steps to Respectful Responses Steps: Clarify the patient’s or family’s request Explore the motives behind the request Have a dialogue with patient or family about hastening death Have a dialogue with patient about assisted suicide and voluntary active euthanasia. Have a dialogue with family about euthanasia

8. Slide 8 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE Step 1: Clarify the Request I Avoid hasty, negative responses: –“Don’t worry about that – you're not there yet.” –“I don't believe in that.” –“I can't discuss that with you because it is illegal.” –“Don't say that, you're going to be okay.” –Remaining Silent.

9. Slide 9 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE Step 1: Clarify the Request II Determine if the patient or family is actually making a request for hastening death: –Is this a request for pain control? –A statement of fatigue with the treatment regimen? –An indirect request for encouragement? –A change in mentation suggesting diminished mental capacity?

10. Slide 10 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE Step 1: Clarify the Request III Stop at Step 1 if you determine that this is not a request for hastening death and respond to whatever is the patient's or family's concern. Go on to Step 2 if you determine the patient or family is requesting that the death be hastened in some way.

11. Slide 11 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE Step 2: Explore the Motives I –Unrelieved pain? –Fear of burden to others? –Financial concerns? –Emotional suffering? –Misunderstanding or misinformation about expectations? –Untreated depression? –Social isolation? –Medication side effects? –Fear? Anxiety? –Loss of control? What is motivating the request to hasten death?

12. Slide 12 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE Step 2: Explore the Motives II Discuss with patient or family a change in their plan of care to address issues that are motivating the request to hasten their death. Implement the agreed upon revised plan of care. If requests for hastening death are not repeated, stop at Step 2 and continue to assess and treat symptoms of suffering. If requests for hastening death are repeated, go on to Step 3.

13. Slide 13 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE Step 3: Discuss Hastening Death I Clarify the difference between legal options for hastening death versus assisted suicide or VAE. If the patient or legal surrogate chooses a legal option, their request should be respectfully honored. If the patient continues to request assisted suicide (or voluntary active euthanasia), go on to Step 4. If the family wishes to provide a loved one who has lost decision-making capacity with a fatal overdose (or other means of hastening death), skip to Step 5.

14. Slide 14 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE Step 3: Discuss Hastening Death II If the patient or surrogate chooses a legal option: –Facilitate communication with primary provider. –Provide emotional support to patient and family. –Alleviate suffering resulting from cessation of treatment, progression of disease, or dying process. –If you are unable to honor the request for personal reasons, arrange to transfer care to another provider. –Reaffirm prognosis where appropriate.

15. Slide 15 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE Step 4: Discuss PAS & VAE with Patient I If patient continues to request assisted suicide or voluntary active euthanasia, respectfully explore the patient's beliefs around these actions. Know your own considered ethical judgment on assisting suicide and voluntary active euthanasia, (recognizing there are pro and con arguments on both sides), and respectfully discuss your views with the patient.

16. Slide 16 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE Step 4: Discuss PAS & VAE with Patient II Make a decision about what assistance you will offer the patient. Continue to provide your usual professional services or arrange to transfer care to another provider if you are unable to continue care for personal reasons.

17. Slide 17 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE Step 5: Discuss Euthanasia with Family I If the family wishes to provide a loved one who has lost decision-making capacity with a fatal overdose (or other means to hasten death), it is no longer considered assisted suicide but euthanasia. If there is clear evidence that the patient requested this assistance, it would be considered voluntary euthanasia. If they did not request assistance, the act would be considered “mercy killing.”

18. Slide 18 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE Step 5: Discuss Euthanasia with Family II Respectfully explore the family's reasons for wishing to provide assistance with dying through an overdose or other "active" means. Review with the family the legal options for withholding or withdrawing therapy. Review with the family the potential legal consequences to the family for providing assistance with dying through an overdose or other proactive means.

19. Slide 19 Compassionate Responses to Patient or Family Requests to Hasten Death TNEEL-NE Step 5: Discuss Euthanasia with Family III Know your own considered ethical judgment on euthanasia and respectfully discuss your views with the family. Make a decision about assistance you will offer the family or action you will take to intervene. Continue to provide your usual professional services or arrange to transfer care to another provider if you are unable to continue care for personal reasons.