Identification of patients who may benefit from palliative care

1. Identification of patients who may benefit from palliative care (25 minutes)

2. Who would benefit from a palliative approach?

3. PSP End of Life Care Algorithm

4. Identify patients: Gold Standard Framework triggers Three triggers for supportive/palliative care: • The surprise question: “Would you be surprised if this patient were to die in the next year? • Choice/need: patient makes a choice for comfort care only, or is in special need of supportive/palliative care. • Specific indicators: clinical indicators for each of 3 main EOL groups (cancer, organ failure, frail elderly/dementia).

5. WOULD I BE SURPRISED IF JAMES LEE DIED WITHIN THE NEXT YEAR?

6. Identify: Use prognostic indicators General: • Co-morbidity. • Recent, multiple ER visits/hospital visits. • Complications of recent hospital stay. • Reducing performance status (ECOG/Karnofsky/PPS). • Dependence in most activities of daily living (ADLs). • Impaired nutritional status despite attempts to improve • Serum albumin < 25 g/l. • Weight loss 5-10% of body weight (last 6 months).

7. Identify: Sentinel events

8. Palliative Approach: Care through all the transitions Early Chronic Disease Management Hope for cure survivor Seniors at risk Decompensation experiencing life limiting illness PPS ESAS BC Palliative benefits Disease advancement Complication indicators Dependency and symptoms increase Home care Death and bereavement Decline and last days Transition 1 Transition 2 Transition 3 Transition 4 Transition 5 Time of Diagnosis Time McGregor and Porterfield 2009

9. Sentinel events questions/comments • “Well, that was a close call. What were you thinking about when this happened?” • “What if things don’t go so well the next time?” • “How did your family do during this time?”

10. Identification: Table discussion (15 minutes) • At your table, start discussing the topics covered: • How will you think differently about identifying patients • How will you communicate and to whom • Consider who should be involved in your community • Registry

11. Patient registry and flagging charts • Include terminally ill patients with: • Cancer • COPD • Chronic heart disease • Renal failure • Neurological conditions, including dementia • Frailty or multiple co-morbidities • Develop EOL registry from CDM-based one

12. Identification - what changes do you see?..... Flagging by MOA • Changes in behaviour • Changes in gait • Decrease in ability to care for themselves • Changes in communication • Gut feeling • Changes in appearance • Missing appointments • Admissions to Long Term Care or multiple hospital visits or even frequent doctors visits • Family members expressing concern, wanting to talk to the doctor about them

13. Identification: Pearls What have we learned? • Everyone can seek to identify. • Tools are available to support identification • Surprise question (intuitive awareness of transition). • Choice (readiness of patient). • Clinical indicators (Functional/Prognostic signs). • Tools are available to support identification.

14. and beyond the Identification……..

15. Roles which emerge at transition “points”

16. Break

17. Communication (40 minutes)

18. Principles of Communication in Medicine • We treat patients, not diseases • All healthcare flows through the relationship between the healthcare provider and patient • The spoken language is the most important tool in medicine • Adapted from Eric Cassell. Talking with Patients, MIT Press,1985

19. Critical importance of communication • Six key components • Talking with patients in an honest and straightforward way. • Willing to talk about dying: Not abandoning/avoiding the dying patient. • Giving bad news in a sensitive way: Balancing being realistic with maintaining hope. • Listening to patients. • Encouraging questions. • Sensitive to patients readiness to talk about death. Weinrich et al. Communicating with dying patients within the spectrum of medical care from terminal diagnosis. AIM 2001; 161: 868-874; Curtis, J Gen Intern Med 2000; 16:41

20. Video of failing older man Things to keep in mind as you view this video: • This series of videos was created to support learning about how conversations regarding advance care planning may be started. • There are many ways to broach this subject. • These conversations are intentionally abridged due to the limits of time for the presentations. • They represent communications between a practitioner and a well-known patient. • In real life these conversations would occur over a longer visit or series of visits. As you watch the video, consider what works well and what might be done differently.

21. When to hold ACP conversations • Patients often give you an opening….. • Patient history form/intake assessment. • Annually for all adults: “I talk with all my patients about this and we talked a little about this last year…” • Part of chronic disease management: “Hope for the best but plan for the worst…” "This illness can have a fairly predictable course…here are some things you need to think about ahead of time…" • Following emergency department/hospital admissions: “I understand you have been in the hospital. What did the doctors say?”

22. Patient wishes • An Advance Care Plan ensures that the patient's wishes would be listened to no matter who is present. • http://www.fraserhealth.ca/media/MyVoiceWorkbookENG.pdf(PJ: this link will need to change to the Provincial model for Sept 1)

23. Video of dying young mom Things to keep in mind as you view this video: • This series of videos was created to support learning about how conversations regarding advance care planning may be started. • There are many ways to broach this subject. • These conversations are intentionally abridged due to the limits of time for the presentations. • They represent communications between a practitioner and a well-known patient. • In real life these conversations would occur over a longer visit or series of visits. As you watch the video, consider what works well and what might be done differently.

24. You will be a better communicator if you…. • Assess understanding: “What you understand about your current health? What are you expecting as your illness changes?” • Assess informational needs: “Are you the kind of person who wants to know all the details about your illness or just an outline?” • Assess decision-making style: “Do you make decisions on your own or as a family?” Adjust your communication accordingly…

25. No CPR form • Purpose: Physician medical order, with patient’s written consent, to allow paramedics and first responders to withhold cardiopulmonary resuscitation if patient has an arrest. • Completed by: Physician and patient - community use only - form not for use in acute care hospital settings. www.healthlinkbc.ca/no_cpr.stm

26. Video of patient with dementia Things to keep in mind as you view this video: • This series of videos was created to support learning about how conversations regarding advance care planning may be started. • There are many ways to broach this subject. • These conversations are intentionally abridged due to the limits of time for the presentations. • They represent communications between a practitioner and a well-known patient. • In real life these conversations would occur over a longer visit or series of visits. As you watch the video, consider what works well and what might be done differently.

27. ACP: Process and intervention • Discuss, document, and review goals of care at various transitions • Break “bad news” across all transition points • Include the family in the care process • Provide information for the patient/family to make informed decisions throughout trajectory. • Plan for acute episodic and crisis events, declining function, and terminal phase management. • Planning ahead can prevent suffering

28. Glossary Advance Care Planning (ACP) - the process of a capable adult talking over their beliefs, values, and wishes about the health care they wish to consent to or refuse, with their health care provider and/or family, in advance of a situation when they are incapable of making health decisions. On Sept. 1, 2011, in addition to being able to appoint a representative in a representation agreement (RA), an adult will be allowed to make an advance directive. Advance Care Plan - a written summary of the capable adult’s advance care planning conversation and wishes to guide their temporary substitute decision-maker or representative, if called to make a health care decision in the event the adult is incapable of making decisions. Advance Directive (AD) - a written instruction made by a capable adult that gives or refuses consent to health care directly to the health care provider, if no appointed Representative. If a Representative is appointed, the Representative must treat the AD as the adult’s wishes, unless the adult has provided in the RA that the HCP may act on an AD without the consent of the Representative.

29. Glossary (continued) • Temporary Substitute Decision-Maker (TSDM) – a family member or friend who is legally qualified and available to make health care decisions on behalf of an incapable adult. The health care provider (HCP) must select a TSDM from the list in the Health Care Consent and Care Facility Admission Act in the order given. • Representative – a person appointed by a capable adult to make health care decisions on behalf of the adult if they become incapable. • Representation Agreement –the document in which a capable adult appoints a representative and sets out the type and scope of decisions that the representative may make on behalf of the adult if the adult becomes incapable.

30. Advance Care Planning legislation in BC • On September 1, 2011, three scenarios will exist for capable adults to plan or make future health decisions with Provincial My Voice: • Advance Care Planning conversation held between patient, physician and/or trusted family/friend; then patient may choose to write advance care plan stating their beliefs, values, wishes for health decisions; (doesn’t make advance directive or representation agreement) • Temporary substitute decision-maker makes health decisions with MD or health care provider per ‘wishes’ • OR • ACP conversation held; then patient chooses to write advance care plan and decides to appoint a representative in a representation agreement • Representative makes health decisions with MD • or other provider based on patients wishes, OR

31. 3) ACP conversation held between capable adult and physician, and/or family/friend; then patient chooses to write advance directive; patient may or may not decide to appoint a representative. If patient has an advance directive but no representative: Physician follows advance directive as long as it addresses the care required; TSDM needed if advance directive does not address the health issue If patient has both advance directive and representative: - Physician must obtain health care decision from representative, unless the adult has provided in the RA that the HCP may act on an AD without the consent of the Representative If the patient has not done, or does not want to do ACP: Physician or other care provider must select a temporary substitute decision-maker from list in HCCCFAA Advance Care Planning legislation in BC (continued)

32. The order below matters! (As of September 1, 2011) The adult’s spouse The adult’s child (may be any child; birth order not relevant) The adult’s parent The adult’s brother or sister (any sibling; birth order not relevant) The adult’s grandparent The adult’s grandchild (any grandchild; birth order not relevant) Anyone else related by birth or adoption to the adult A close friend of the adult A person immediately related to the adult by marriage. The TSDM must be at least 19, been in contact with the adult in past 12 months, have no disputes with adult, be capable of giving, refusing or revoking consent, be willing to comply with duties in Part 2, section 19. ACP legislation in BC: Appointment of a Temporary Substitute Decision-Maker (TSDM)

33. Substitute Decision Makers (SDM) • The role of the SDM is to represent the values, beliefs, and wishes/preferences/instructions of the patient. • SDM is a stressful role as own preferences may vary from those of the patient and/or other family/friends • Frame the question in a way that clearly indicates what you need from the SDM: “What would your father be thinking … ?” “What would be important to your mother ..?” “What would they do in this circumstance?”

34. “Everything, including CPR must be done”… “Differential diagnosis” of incongruent requests for care: • Language barrier • Low health literacy • Not all options have been discussed • Not understanding the normal process of dying • Not understanding how the day to day events are manifestations of a terminal illness • Differing values of what is quality of life and what is important at end of life

35. “Everything, including CPR must be done…” • Professional interpreter • Short life review of the patient may elicit memories of conversations that aid in decision-making • Which member of the team works best with family? • Liaise with other teams/physicians involved to ensure message is consistent • Build trust with consistent messaging and care • Ethics, spiritual care provider/community religious leader consultation if appropriate

36. “Everything, including CPR must be done…” (continued) • Shared-decision making includes a recommendation by the clinician • Decision-making is a balance between patient/SDM autonomy and physician beneficence/nonmalificience • Clinicians must strive not to project their values onto patients and families • Keep communication lines open…

37. Healthcare provider barriers/solutions • Cultural: Ask how patient and family make decisions about serious illness • Patient responds with emotion: Be sensitive to patient readiness to discuss • Not within their role: We can all listen and support patients dealing with their illness • Lack of confidence and comfort with the conversation: Learn some opening lines… • Don’t want to take away hope: Evidence shows that it increases patient satisfaction with care • Time constraints: Can set aside time for this as part of care

38. Patients barriers/solutions • Too many medical problems: Discuss what is important to the patient as their illness progresses – no need to understand illness to discuss this • Doctor too busy: Put My Voice brochures in the office waiting room to show your readiness to discuss • Perceiving ACP as irrelevant: “I want to be able to respect your wishes if you are unable to make decisions • Prefer to leave health in God’s hands: Healthcare providers do not control who lives or dies but we can try to make the journey as comfortable as possible • Information needs about health and choices: Have multiple sources of information. Canadian Virtual Hospice (www.virtualhospice.ca) is a good source of palliative care information • Nervous, sad, or too busy: Sharing concerns and planning ahead can reduce anxiety • Need help with “the form”: Have the conversation first thenget family member to help with form

39. Communication pearls All primary providers can: • Initiate ACP conversations. • Share information. • Contribute to clarifying needs/preferences and establishing goals of care. • Support families to keep talking. • Clinicians can be healers through listening, supportive conversation and presence. “The secret of caring for the patient is caring about the patient.” • Peabody 1929

40. Skills-based practice session • Groups of 3 • Each scenario has 3 roles: patient, clinician, and observer. • Choose role you wish to play. • Take 1-2 minutes to review your role. • Clinician initiates the 5 minute conversation. • Take 2 minutes to review the role play together.

41. Review skills-based exercise • What feelings did you experience as you played the role of the patient? • What did you learn as you played the role of the observer? • In the clinician role, what surprised you? • What 1 thing might you change about your ACP conversations in the future?