Advance Care Planning in End Stage Renal Disease

1. Advance Care Planning inEnd Stage Renal Disease Mike Harlos MD, CCFP, FCFP Medical Director, WRHA Palliative Care Medical Director, St. Boniface Hospital Palliative Care

2. http://palliative.info

3. Advance Care Planning Advance Care Planning is the process of dialogue, knowledge sharing, and informed decision-making that needs to occur at any time when future or potential end-of-life treatment options and preferences are being considered or revisited. The primary goal of Advance Care Planning is to seek consensus on care plans that reflect the best interests of clients/patients/residents.

4. Advance Care Planning Process to determine the general direction of care choices… “Which way is the wind blowing in the approach to care?”

5. Manitoba Health Care Directives Act • Must be competent, aged 16 yrs old or more • A directive must be in writing and dated (witness not required unless physically incapable of signing) • “No person is required to inquire into the existence of a directive or of a revocation of a directive” • “No action lies against a person who administers or refrains from administering treatment to another person by reason only that the person • has acted in good faith in accordance with the wishes expressed in a directive or in accordance with a decision made by a proxy; or • has acted contrary to the wishes expressed in a directive if the person did not know of the existence of the directive or its contents.

6. Substitute Decision Makers • The following, in order of priority, may act as substitute decision-makers: • A proxy named in a Health Care Directive. • A Court-Appointed Committee appointed under section 75(2) of the Mental Health Act, or a Substitute Decision-Maker for Personal Care appointed under the Vulnerable Persons Living with a Mental Disability Act. A Committee or a Substitute Decision-Maker for Personal Care may be an individual(s) or the Public Trustee. Some Orders of Committeeship were previously known as “Orders of Supervision”. Existing Orders of Supervision are treated as Orders of Committeeship under the Mental Health Act. • Others, including family and/or friends.

7. Family/Friends as Substitute Decision Makers • likely to be the most common scenario. • For ACP, must have the support of all interested and available parties. • usually, but not necessarily, a close relative, who speaks for all. • may, however, be a supportive friend • Power of Attorney does not entitle its holder to make health care decisions however… • on occasion, an existing power of attorney may be most appropriate to fulfill this role, since such an individual, although limited to property decisions, has obviously been placed in a position of trust.

8. Obtaining Substituted Judgment You are seeking their thoughts on what the patient would want, not what they feel is “the right thing to do”.

10. Phrasing Request: Substituted Judgment “If he could come to the bedside as healthy as he was a year ago, and look at the situation for himself now, what would he tell us to do?” Or “If you had in your pocket a note from him telling you that to do under these circumstances, what would it say?”

11. Advance Care Plan 1 This is often referred to as palliative or comfort care. It focuses on aggressive relief of pain and discomfort. There is no CPR (intubation, assisted ventilation, defibrillation, chest compressions, advanced life support medications). There are also no life sustaining or curative treatments such as ICU, tube feeds, transfusions, dialysis, IV’s, and certain medications. All available tests and treatments necessary for palliation are done, including medications and transfer to hospital if necessary.

12. Advance Care Plan 2 This provides palliative and comfort care, but also allows for treatment of reversible conditions (e.g. pneumonia, blood clot) that may have developed. There is no CPR. ICU, all available tests, and treatments for reversible conditions are offered, based on medical assessment, except for CPR. Certain tests and treatments for any reversible conditions may be refused based on your values (e.g., tube feeds, dialysis, ICU, transfusions, IV’s, certain medications, certain tests, transfer to hospital, etc.)

13. Advance Care Plan 3 This provides any necessary palliative and comfort care as above, plus available treatment of all conditions, both reversible and nonreversible, with no restrictions, except for CPR. There is no CPR. As above, a person may elect to refuse any tests or treatments for both nonreversible and reversible conditions. If so, they should be listed:

14. Advance Care Plan 4 This plan provides for all available treatment of all conditions, and includes full CPR.

15. Communication Considerations • Consider the patient & family as a culture new to you • If you don’t know how things work, it’s best to observe and inquire. • Don’t make assumptions about how things work in this family (“micro-culture”) based on ethnicity or religion (“macro-culture”) • How much does the patient want to know, and how to inform (directly, or through family)? • With the unresponsive patient, ask family where they would like to hold discussions… in front of patient, or privately

16. Considerations in End-of-Life Decisions • What does / would the patient want done? • What is actually possible to address? • What is the “domino effect” of the test or intervention (where will it take you, and what will you do about it?) • What is the “ripple effect” on others?

17. Possible Impossible • Review: • hopes and goals of treatment – what they are and whose they are • expected course with and without • potential burdens and benefits Discuss, but do not present as an option only to be withdrawn as such when asked for… Rather, explain why this will not be pursued / attempted Eg: “You might be wondering why we can’t just…” Choices and Non-Choices Treatment Considered: Are Goals Achievable?

18. Useful Approaches in Considering Options • Put the decision in the context of the last month or so: • Momentum of functional decline • Quality of life • For substituted decisions: have there been recent comments reflecting a probable approach? • “I’ve had enough… I wish this would end soon” • Consider the difference between prolonging living and making someone take longer to die. • A concept that depends on interpretation of the quality of life… need input from patient / family

19. Treatment / Intervention Considerations • What are the goals of the treatment? • Whose goals are they, and are they consistent with those of the patient? • Is it possible to achieve the goals? • What are the: • Positive effects vs. Side effects (clinical assessment by health care team) • Benefits vs. Burdens (experiential interpretation by patient / family) • Is there enough reserve to tolerate the treatment?

20. Burdens Benefits (experiential assessment) Positive Effects Side Effects (clinical assessment)

21. TALKING ABOUT DYING “Many people think about what they might experience as things change, and they become closer to dying. Have you thought about this regarding yourself? Do you want me to talk about what changes are likely to happen?”

22. First, let’s talk about what you should not expect. • You should not expect: • pain that can’t be controlled. • breathing troubles that can’t be controlled. • “going crazy” or “losing your mind”

23. If any of those problems come up, I will make sure that you’re comfortable and calm, even if it means that with the medications that we use you’ll be sleeping most of the time, or possibly all of the time. Do you understand that? Is that approach OK with you?

24. You’ll find that your energy will be less, as you’ve likely noticed in the last while. You’ll want to spend more of the day resting, and there will be a point where you’ll be resting (sleeping) most or all of the day.

25. Gradually your body systems will shut down, and at the end your heart will stop while you are sleeping. No dramatic crisis of pain, breathing, agitation, or confusion will occur - we won’t let that happen.