Practice Support Program End of Life

1. Practice Support ProgramEnd of Life Presentation for BCPGA April 24, 2014

2. Acknowledgements • Practice Support Program End of Life Committees:Dr. Cathy Clelland, Chair, Sheila Balson, Andy Basi, Sherry Bar, Dr. Doris Barwich, Dr. Clifford Chan-Yan, Louise Donald, Dr. Ian Courtice, Dr. Romayne Gallagher, Dr. Neil Hilliard, Pamela Hinada, Dr, Bruce Hobson, Dr. Marcus Hollander, Judy Huska, Pauline James, Dr. Marnie Jacobsen, Dr. Helena Kadlec, Liza Kallstrom, Dr. Douglas McGregor, Dr. Chris Rauscher, Pat Porterfield, Della Roberts, Christina Southey • BC Hospice Palliative Care Association Learning Centre for Palliative Care: Hospice Palliative End-of-Life Primary Care Provider Education Project • Fraser Health End of Life Care Program: Advance Care Planning Initiative • Gold Standards Framework (http://www.goldstandardsframework.nhs.uk)

3. Module aims To improve the care of patients and families living with, suffering and dying from life-limiting and chronic illnesses by: • Identifying patients early who could benefit from a palliative approach to care • Enhancing health care providers’ confidence and communication skills to assist in Advance Care Planning (ACP) conversations. • Improving the experience of health care providers, patients and families: • Assessing patient and family needs from a palliative perspective. • Improving the experience of the patient, family, physician, MOA and healthcare providers in End of Life care. • Improve health care providers’ understanding related to End of Life care (e.g. care planning, forms).

4. PSP End of Life Care Algorithm

5. Changing face of dying We are living longer. By 2025: • 30% of the population >65. • 33% increase in deaths over 2004. • 2/3 will die with 2 or more chronic diseases after months or years in state of “vulnerable frailty”. • Only 20% of us will die with a recognizable terminal (“palliative”) phase.

6. Cause of deaths in Canada

8. Ambiguous dying “There will not be a distinct terminal phase. The week we die will start out like any other and some unpredictable calamity will occur. Amongst those of us with advanced heart failure, we will have had a 50-50 chance to live for six months on the day before we died” Joanne Lynn: Sick to Death and Not Going to Take it Anymore (2004)

9. The Palliative Approach to life-limiting illness

10. Canadian Hospice Palliative Care Association: Model of care (2002) www.chpca.net Bereavement Care Disease-modifying therapy Palliative Approach to Care Diagnosis of life-limiting illness Death Illness trajectory

11. WHO definition of palliative care Palliative care is an approach that improves the quality of life of patients & their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, impeccable assessment & treatment of pain and other problems, physical, psychosocial and spiritual. http://www.who.int/cancer/palliative/definition/en/

12. Palliative Approach Guided by person centered goals of care: • Pain and symptom management. • Psychosocial care for person. • Psychosocial care for family. • Spiritual care. • Disease management. • Preparing for and managing dying. • Bereavement. (Canadian Hospice Palliative Care Association: Norms, 2002)

13. Disease advancement Early Decompensation Experiencing life limiting illness Decline and last days Palliative Approach: Care through all the transitions Death and bereavement Dependency and symptoms increase Transitions Transitions Transitions Transitions Transitions Time of Diagnosis Time McGregor and Porterfield 2009

14. Best practice: Collaborative and interdisciplinary Palliative Care Australia

15. Outcomes: Palliative approach to care

16. Improved quality of life

17. Improved survival

18. Outcomes “Good death” in the most appropriate location. • Better pain and symptom management. • Better long term outcomes for bereaved relatives. • Improved experience of care. • Better quality of care. • Lower health care costs. Zhang et al. Arch Intern Med Vol 169(5) Mar 9 2009:480-488

19. BC Guidelines.ca

20. Identification of patients who may benefit from palliative care

21. Who would benefit from a palliative approach?

22. PSP End of Life Care Algorithm

23. 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).

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

25. 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).

26. Identify: Sentinel events

27. 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?”

28. 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

29. Identification - what changes do you see?..... Flagging by MOA/Healthcare Providers • Changes in behavior • 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

30. and beyond the Identification……..

31. Roles which emerge at transition “points”

32. 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

33. 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

34. 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?”

35. 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)

36. 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…

37. 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

38. 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

39. Glossary Advance Care Planning (ACP)– the process of a capable adult talking over their beliefs, values, preferences about health care with their health care provider and/or family in advance of a situation where they are incapable of consent. Temporary Substitute Decision Maker – a temporary decision-maker chosen by the healthcare providerto represent the patient in decision-making in a situation where the patient is not capable. Health Care Representative – a legally appointed substitute decision-maker for the patient. This must be done while the patient is capable. This person is recognized by BC law as the patient’s decision-maker. Advance Directive (AD)-a written instruction made by a capable adult that instructs the health care provider if no Representative, or to the person’s Representative in a situation where the patient is not capable of decision-making.

40. Advance Care Planning legislation in BC • On September 1, 2011 four scenarios will exist for capable adults to make future health care decisions using Provincial My Voice: • Capable patient decides to self appoint a representative: • Representative is the legal decision-maker on behalf of the patient based on their knowledge, conversations or advance care planning that may have been done by the patient • 2) Capable patient decides to self appoint a Representative and to write an Advance Directive: • Representative is the legal decision-maker on behalf of the patient based on Advance Directive (AD)

41. Advance Care Planning legislation in BC (continued) 3) Capable patient decides to write only an Advance Directive: • Healthcare providers can base decisions on AD or can appoint temporary substitute decision-maker (TSDM) to assist in interpretation of AD 4) No legal advance care planning in place: • Healthcare providers appoints a temporary substitute decision-maker (TSDM) to represent patient for decision-making Includes patients: • who may not have considered ACP • who have considered ACP, are comfortable with TDSM speaking for them, and may or may not have an ACP document that they want to make into an AD

42. ACP legislation in BC: Appointment of a Temporary Substitute Decision-Maker (TSDM) The order below matters! • 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.

43. Substitute Decision Makers (SDM) • The role of the SDM is to represent the values, beliefs, and wishes/preferences of the patient. • SDM is a stressful role as often own preferences may vary from those of the patient. • 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?”

44. “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

45. “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

46. “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…

47. 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

48. 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

49. Communication pearls All primary providers/ healthcare providers can: • Initiate or encourage 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