1. HEALTH CARE DECISIONS ACROSS THE TRAJECTORY OF ILLNESS Susan Barbour RN MS ACHPN

2. or How to be prepared to make difficult decisions when a loved one has a serious neurological illness

3. How Can We Prepare Ourselves to Make the Best Decisions? “Shared Decision Making” A model that fosters collaboration between the patient & health care provider Actively engages the patient (& family) in decision making and the exchange of information when faced with choices Outcome is an informed decision made in the best interests of the patient For more information: informedmedicaldecisions.org choosingwisely.org

4. Questions you can ask your provider Can you tell me the risks & benefits? What is the likelihood of those happening? What would be the best case scenario? What would be the worse case scenario? What happens if we decide not to treat? Or not to operate? Or not to …. What can we expect in a few days? A few months? A few years?

5. What’s important? Each of us is unique and values different aspects of what is a good life. Do you know what is important to your loved one? Are you uncomfortable having or starting the conversation? How can you find out what is important to help you make difficult decisions especially when you are making them for someone else?

6. Go Wish www.gowish.org

7. The Conversation Project theconversationproject.org

8. PREPARE www.prepareforyourcare.org

10. 5 Wishes www.agingwithdignity.org

11. My Aunt Barbara – her wishes 1. No forced feeding and breathing 2. No extraordinary resuscitation 3. “Let me Go” – how? You know! 4. If I can’t talk, then Kapoot! Thanks! Barbara

12. The challenges of neurological illnesses Your loved one may not be able to speak, comprehend or help you make these difficult decisions when the time comes Waiting until ‘you are there’ is often too late to have meaningful discussions Making these difficult decisions is much easier knowing you are making the decisions your loved one would want if they could tell you Discussing what’s important early (and often) can relieve you of some of the emotional stress when making these decisions

13. Common Decision Points What are the different treatments available? What to do when the treatments stop working or the side effects are burdensome? How does your loved one feel about artificial feeding (feeding tubes) if they have difficulty swallowing? Is it indicated? Do they want assisted ventilation in an ICU? Is it indicated? “DNR- Do Not Resuscitate”? What are their preferences for care at the end of life? When do you utilize palliative care & hospice?

14. What is Palliative Care? Specialized medical care for people with serious illness Focused on the relief from symptoms, pain, and the stress of a serious illness Goal is to improve the quality of life for both the patient and the family Provided by a team who work with the patient’s other health care providers to provide an extra layer of support Provides guidance with difficult and complex treatment choices Appropriate at any stage in a serious illness Provided together with curative treatment Not the same as hospice care

15. What is Hospice? A philosophy of care that focuses on comfort and quality of life by relieving pain and suffering at the end of life Neither prolongs life nor hastens death Composed of a team of nurses, social workers, doctors, physical therapists, home health aides, volunteers & spiritual support Includes provision of medical equipment and supplies, bereavement services and short term inpatient or respite care May be in the hospital, nursing home, residential facility or most commonly in the home Paid for by insurance 24 hour availability

16. How do I know when we are ready for Hospice? Often difficult to recognize when your loved one’s condition has been gradually worsening Often you are so overwhelmed you cannot see that hospice is needed There are guidelines for different diseases and conditions to help decide if someone is ready for hospice care Can get introductory meeting at your home to see what hospice can offer you

17. We encourage you to… Actively engage with your health care provider to help you make decisions using the shared decision making model  ‘Have the conversation’ with your loved ones BEFORE it’s not possible and communicate those wishes to their health care provider  Find out how Palliative Care and Hospice can help you navigate the challenge of caring for someone with serious neurological illness