Navigating "The Conversation"
Imagine you are the clinician caring for the following patient:
The female patient is 78-years-old and has a five year history of increasing dyspnea on exertion. For three months, she has been unable to garden or do housework. Paroxysmal nocturnal dyspnea previously occurred occasionally after eating meals with salt, but now happens on most days of the week.
Attempts to better control symptoms (increasing doses of angiotensin-converting enzyme [ACE] inhibitors, beta-blockers and diuretics) have exacerbated her stage III chronic renal insufficiency. A recent echocardiogram demonstrated a dilated left ventricle (LV) with left ventricular ejection fraction (LVEF) of 33%, moderate mitral regurgitation, and elevated filling and pulmonary pressures. Coronary angiography had demonstrated luminal irregularities, left ventricular end-diastolic pressure (LVEDP) 20 mm Hg, and aortic pressure of 98/50 mm Hg.
She suffers from mobility-restricting osteoarthritis. Her daughter, who lives nearby and accompanies her today, notes her to have increasing forgetfulness. The patient is a widow as of three years ago. She has no advance directive.
Her son, who lives out of state, read on the internet that patients with low LVEF should have defibrillators and left ventricular assist devices (LVADs). He calls his mother and his sister frequently to remind them to insist upon these interventions.
You wonder what the patient thinks about her current condition and what she thinks the future may hold, but it seems cold to ask bluntly, "So, what are your thoughts about end of life care?" Here are some gentler ways to begin:
"I recall that you mentioned you became a widow three years ago. What went on with your husband around that time?"
This provides a different twist on the 'family history', where an inquiry about the family's prior experience with end-of-life care and the death of a loved one may have left strong opinions or regrets about medical care, life-prolonging interventions, and the process of medical decision-making. Knowing this history helps to define the patient's perspective. Just like your GPS needs a starting location in order to guide you to your chosen destination, you need both the starting point and the 'where are we going' information for the patient.
It is also important to figure out who is in 'the driver's seat.' What is the family's custom for making medical decisions? You might ask:
"Some people facing complex medical decisions want to be personally and fully informed on all the details, all the pros and cons of each possible intervention. What are your thoughts on this?"
If she is not quite sure how to respond, examples might help:
"Some people want a trusted loved one to help navigate all the data and help make decisions. Likewise, there are some who feel stressed and anxious having to deal with so much information; while they might want to ask an occasional question, they would prefer to trust a loved one to hear all the details and make the right choices. Other people want to make all of the decisions themselves, and may not want to share much information with anyone else. What do you think would work best for you?"
Clarifying how information should be handled is a way of respecting patients' autonomy and cultural context, whether they want decision-making to be shared, delegated, or kept under their own control. If this discussion clarifies who should (and perhaps who should not) be a surrogate, be sure to document that in your note. Some states recognize such an 'oral' (verbal) directive as legally establishing surrogacy. You may also encourage the patient to execute a Durable Power of Attorney for Health Care (DPAHC) document which appoints a person or persons to act as surrogates in the event the patient loses decision-making capacity. It should be noted that patients can elect to defer decisions to surrogates even while they have intact decision-making capacity.
Further inquiry into 'destinations' can be helpful:
"Whether one procedure or another is right for you may be an important decision, but what I feel is really important is knowing what we are hoping to accomplish with our medical interventions. What can we accomplish that that will help you in your everyday life, and how you enjoy living? What does a 'good day' look like to you?"
Patients are sometimes surprised when you turn the discussion in this direction. Not many of them have been asked this line of questioning, and the answers should guide decisions when considering medical interventions such as LVAD, implantable cardioverter-defibrillator (ICD), and biventricular pacemakers.
Thinking ahead about specific interventions might be helpful, but pre-made decisions about future specific medical interventions are unlikely to meet a standard of informed consent as they lack context and in-the-moment information regarding priorities, likely benefits, burdens, and alternatives. Recommended best practice is moving away from written directives about care interventions, and instead there are new tools for facilitating conversations among loved ones about important goals for meaningful living even when life might be short. See the below handout for a few of these tools.
You can introduce these questions and schedule a follow up appointment to discuss them with the patient after she has had time to think them over and discuss them with her loved ones.
Tools that Help the Conversation about Goals of Health Care
A handout for patients and their loved ones
Go Wish Cards: http://www.codaalliance.org/gowishcards.html. Designed for adults; 35 cards, and one wild card, that have 'wishes' to choose or discard about what would be most hoped-for if time was short, with instructions for interactive play and discussing your choices. English and Spanish. Free online trial version at www.gowish.org
PREPARE For Your Care: https://prepareforyourcare.org. For adults; can be used by mature minors. Plays as a narrative video for those with limited computer skills. English and Spanish. A five-step online program: choosing a medical decision maker, deciding what matters most in life, choosing flexibility for your decision maker, talking to others about your wishes, and asking doctors the right questions. Free online.
The Conversation Project Starter Kit: http://theconversationproject.org. Adults; English, Spanish, French, and Mandarin. Pediatric version in English. This is not about filling out Advance Directives or other medical forms, it is about talking to your loved ones about what you or they want for end-of-life care. Also has "How to talk to your doctor" in English, French, and Mandarin. Free.
My Gift of Grace: http://mygiftofgrace.com. A conversation game for groups; 47 question cards that cover a wide variety of topics about living and dying well. The players have a chance to share their answers to the same questions.
Five Wishes: http://www.agingwithdignity.org/five-wishes.php. For adults (over age 18) English, Spanish, and 26 other languages. A form that in 42 states is a legal advance health care directive if filled out and witnessed in accordance with the instructions. $5 - quantity discounts available. Five Wishes Online: https://fivewishesonline.agingwithdignity.org. English only. Fill out the form online, then print it or send/share it electronically.
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