Advance Care Planning:

Advance Care Planning: Joan M Teno, M.D., M.S. Professor of Community Health and Medicine Associate Medical Director of Hospice Care of Rhode Island

Claims • AD are important, but not sufficient to improve end of life care. (Sorry no quick fix) • Process and plans are more important then piece of paper • Focus on readiness • Avoid overly focus on small things

SUPPORT Advance Directives (After the Patient Self-determination Act) Decision making about resuscitation Advance Directive NO YES Chart documentation of CPR preferences (%) 33 38 Discussion about CPR with physician (%) 30 43 DNR order among those with preference to 54 58 forgo CPR (%) Death on first admission (%) 22 19

Advance Directives and Costs

Actually, The Lack of Resource Savings is Reassuring... • Only one in eight of physicians counseled patients about an advance directive. • Just two out of five patients had talked to any physician about their directive. • By the second week of the hospitalization for a serious illness, only one in four physicians were aware of the patients’ advance directives

SUPPORT: Advance Directives 4804 Patients enrolled in Phase II 598 only named a proxy or stated preference in standard living will terms 688 Documents Placed in Medical Record 90 Documents with Additional Instructions 36 Documents Instructing to Forgo Life-Sustaining Treatment

Advance Care Planning “...At that time, the patient’s wife expressed concern that the patient not be kept alive if there was no hope of recovery, that those were his wishes, and she wanted to honor them…her question was how would she know when to stop?”

Lessons from ADVANCE DIRECTIVE MOVEMENT • Morality is no longer the issues • Rather, “when” or “At what point, do you make a transition in the goals of care? • Now we are are left with more difficult decisions of timing...

New Framework for Advance Care Planning • Emphasis on communication and negotiation regarding goals and likely outcomes • Specificity targeted to age and patients condition • Not a single conversation, but occurs over time • Should formulate contingency plans

One Targeting Possibility • “Healthy” persons • Serious Illness • Death is likely outcome

ACP for the “Healthy” person • Content should focus on: - naming a proxy - stating undesirable outcome states - unusual preferences

ACP for the “Healthy” person • Action items: - discuss surrogate for this and all categories - document in chart - possibly complete AD

Communication Strategies forHealthy Persons • Offering choices should be part of care “There are many ways to control hypertension…” • Proxy “If you were too sick to talk with me about your health care decisions, who would you like me to speak with?”

Communication Strategies forHealthy Persons • Eliciting unusual preferences “Do you have any religious belief or personal convictions about medical treatment that I should know?” • Acknowledging State Law requirements “In Maryland, the law will not allow me to stop a feeding tube if you are in permanent coma unless you write it down in your advance directive”

Communication for a Patient with Serious Illness • Additional Content: • What is important to you? Fears? • What outcomes do you want to avoid? • Consider time limited trial

Communication for a Patient with Serious Illness • Action items: - Discuss prognoses and likely outcomes with various Rx options - Discuss with surrogate - Document in chart goals and values -- possibly treatment preferences and plans to honor - Possibly complete an AD - Provide emotional support and ensure continuity of plan

Overall Strategy • STEP ONE - "Where am I in my disease course?" Have I reached a critical turning point?” • Step Two- Communicate and Negotiate-- what are your goals of care? • Step Three - Develop contingency plans to honor those preferences

Communication Strategies forLimited Life Expectancy • Formulate plan of care - Specifics are essential “Mr. M, you have said it important that your medical care focuses on your comfort. Even if you get more short of breath, you want to stay at home… Is that correct ?…. Now if you do get short of breath and it does not respond to usual treatment, we will use morphine. and you can call ....”

Getting physical context right Find out how much information do they know Find out how much information they want to know Share information- align and educate Empathy Closure and next steps ACP at a time Crisis - Buckmans’ Six Steps

Getting the Context right Introduce yourself and your role in the medical care of their loved one. Find a quiet setting if at all possible Applying to Advance Care Planning

Find out much the patient and/or family knows Where is the patient in their disease trajectory? QOL? Listen carefully - how do they describe the illness? patients' prognosis? Through carefully listening, you will learn how to tailor the information that you present to the special needs of this patient and their families. Applying to Advance Care Planning

Find out how much information the patient and/or family wants to know Some may not want to know information on prognosis or even undertake advance care planning. Yet, treatment goals and plans should be discussed. Applying to Advance Care Planning

Share information- align and educate What is their mental model? Educating and clarifying misperceptions are often an important part of sharing information Applying to Advance Care Planning

Empathy One must be cognizant of how far one can push a patient or family in decision making if they have not fully come to terms with their emotional response to their situation Applying to Advance Care Planning Readiness

Next Steps and Closure Key to closure is that you summarize the situation, state the plan, and set a time for the next meeting. Applying to Advance Care Planning

Not focusing on the small details • “We were trying to decide whether we would introduce tube feeding and we had decided that we would not …and then, she suddenly came into a period of consciousness that made us rethink the game plan and then we did decide to do the tube placement…and by the time we got the tube placement in, she had lapsed into unconsciousness again.”

What I learned from End of Life Decision Making from My Dog? • It is so easy to focus on the small victory and forget the big picture. • Love means letting go • You’ll know when

References • Teno JM, Lynn J. Putting Advance Care Planning Into Action. Journal of Clinical Ethics. 1996; 7(3):205-213. • Teno JM, Licks S, Lynn J, Wenger N, Connors AF, Phillips RS, O'Connor MA, Murphy DP, Fulkerson WJ, Desbiens, N, Knaus WA. Do Advance Directives Provide Instructions That Direct Care?Journal of the American Geriatrics Society. April 1997; 45(4): 508-512. • Teno JM, Lynn J, Connors AF, Wenger N, Phillips RS, Alzola C, Murphy DP, Desbiens N, Knaus WA. The Illusion of End-of-Life Resource Savings with Advance Directives. Journal of the American Geriatrics Society. April 1997; 45(4): 513-518. • **Teno J, Lynn J, Wenger N, Phillips RS, Murphy DP, Connors AF, Desbiens N, Fulkerson W, Bellamy P, Knaus WA for the Support Investigators. Advance Directives for Seriously Ill Hospitalized Patients: Effectiveness with the Patient Self-Determination Act and the SUPPORT Intervention. Journal of the American Geriatrics Society April 1997; 45(4): 500-507. • Teno, JM. Advance Care Planning in the Outpatient and ICU Setting. In Managing Death in the ICU: The Transition from Cure to Comfort. Edited by Curtis JR and Rubenfeld GD. Oxford University Press, New York, NY. 2001: 75-82. • Teno, JM. Advance Care Planning for Frail, Older Persons. In Geriatrics Palliative Care. Edited by Morrison, R. Sean, M.D., Meier, Diane E., M.D. and Deputy Editor, Capello, Carol F., Oxford University Press, New York, NY, In press, 2003

Advance Care Planning: