Seminar in Palliative Care September 26 – October 02, 2010 Salzburg, Austria in Collaboration with

The EPEC-O Curriculum is produced by the EPEC TM Project with major funding provided by NCI, with supplemental funding provided by the Lance Armstrong Foundation. Education in Palliative and End-of-life Care - Oncology The Project EPEC-O TM

Advance Care Planning

Objectives... l Define advance care planning, explain its importance l Describe the steps of advance care planning l Describe the role of patient, proxy, physician, others l Define advance care planning, explain its importance l Describe the steps of advance care planning l Describe the role of patient, proxy, physician, others

... Objectives l Distinguish between statutory and advisory documents l Identify pitfalls and limitations in advance care planning l Utilize planning to help put affairs in order l Distinguish between statutory and advisory documents l Identify pitfalls and limitations in advance care planning l Utilize planning to help put affairs in order

What is advance care planning?... l Process of planning for future medical care l Values and goals are explored, documented l Determine proxy decision maker l Professional, legal responsibility l Process of planning for future medical care l Values and goals are explored, documented l Determine proxy decision maker l Professional, legal responsibility

... What is advance care planning? l Trust building l Uncertainty reduced l Helps to avoid confusion and conflict l Permits peace of mind l Trust building l Uncertainty reduced l Helps to avoid confusion and conflict l Permits peace of mind

5 steps for successful advance care planning 1. Introduce the topic 2. Engage in structured discussions 3. Document patient preferences 4. Review, update 5. Apply directives when need arises 1. Introduce the topic 2. Engage in structured discussions 3. Document patient preferences 4. Review, update 5. Apply directives when need arises

Step 1: Introduce the topic l Be straightforward and routine l Determine patient familiarity l Explain the process l Determine comfort level l Determine proxy l Be straightforward and routine l Determine patient familiarity l Explain the process l Determine comfort level l Determine proxy

Step 2: Engage in structured discussions l Proxy decision maker(s) present l Describe scenarios, options for care l Elicit patient’s values, goals l Use a worksheet l Check for inconsistencies l Proxy decision maker(s) present l Describe scenarios, options for care l Elicit patient’s values, goals l Use a worksheet l Check for inconsistencies

Role of the proxy l Entrusted to speak for the patient l Involved in the discussions l Must be willing, able to take the proxy role l Entrusted to speak for the patient l Involved in the discussions l Must be willing, able to take the proxy role

Patient and proxy education l Define key medical terms l Explain benefits, burdens of treatments Life support may only be short-term Any intervention can be refused Recovery cannot always be predicted l Define key medical terms l Explain benefits, burdens of treatments Life support may only be short-term Any intervention can be refused Recovery cannot always be predicted

Elicit patient’s values, goals l Ask about past experiences l Describe possible situations l Write a letter l Ask about past experiences l Describe possible situations l Write a letter

Use a validated advisory document l A number are available l Easy to use l Reduces chance for omissions l Patients, proxy, family can take home l A number are available l Easy to use l Reduces chance for omissions l Patients, proxy, family can take home

Step 3: Document patient preferences l Review advance directive l Sign the documentation l Enter into the medical record l Recommend statutory documents l Ensure portability l Review advance directive l Sign the documentation l Enter into the medical record l Recommend statutory documents l Ensure portability

Step 4: Review, update l Follow up periodically l Note major life events l Discuss, document changes l Follow up periodically l Note major life events l Discuss, document changes

Step 5: Apply directives l Determine applicability l Read and interpret the advance directive l Consult with the proxy l Ethics committee for disagreements l Carry out the treatment plan l Determine applicability l Read and interpret the advance directive l Consult with the proxy l Ethics committee for disagreements l Carry out the treatment plan

Common pitfalls l Failure to plan l Proxy absent for discussions l Unclear patient preferences l Focus too narrow l Communicative patients are ignored l Making assumptions l Failure to plan l Proxy absent for discussions l Unclear patient preferences l Focus too narrow l Communicative patients are ignored l Making assumptions

Preparation for the last hours of life... l Advance planning Personal choices CaregiversSetting l Loss, grief, coping strategies l Advance planning Personal choices CaregiversSetting l Loss, grief, coping strategies

... Preparation for last hours of life l Educating / training patients, families and caregivers Communication Tasks of caring What to expect Physiologic changes, events Symptom management l Educating / training patients, families and caregivers Communication Tasks of caring What to expect Physiologic changes, events Symptom management

Advance practical planning... l Financial, legal affairs l Final gifts Bequests Organ donation l Autopsy l Financial, legal affairs l Final gifts Bequests Organ donation l Autopsy

... Advance practical planning l Burial / cremation l Funeral / memorial services l Guardianship l Burial / cremation l Funeral / memorial services l Guardianship

Choice of caregivers l Be family first, caregivers only if comfortable Everyone comfortable in the role Seek permission Change roles if stressed l Be family first, caregivers only if comfortable Everyone comfortable in the role Seek permission Change roles if stressed

Choice of setting... l Burdens, benefits weighed l Permit family presence PrivacyIntimacy l Burdens, benefits weighed l Permit family presence PrivacyIntimacy

... Choice of setting l Minimize family burden Risk to career, personal economics, health Ghosts l Alternate setting as backup l Minimize family burden Risk to career, personal economics, health Ghosts l Alternate setting as backup

Summary