3 tips - You CAN overcome your patient's reluctance to have advance care planning conversations

doctors Jan 17, 2022

The challenge: 

Starting end-of-life advance care planning conversations with our patients can seem daunting. Tight, overbooked schedules, demanding workloads, and even lack of training are some of the barriers. 

Another barrier: our patients’ ambivalence - even reluctance - to have end-of-life advance care planning conversations. 

Interestingly, I’ve found that both doctors and patients alike confuse advance care planning conversations with delivering bad news conversations. 

Here are 3 tips to help.  

 

Tip #1: encourage patient readiness.

We clinicians can take comfort. Most of my patients were pleased, in hindsight, when I made the effort to discuss elements of their end-of-life advance care planning in a routine, supportive, and sensitive way.

Surprise: I discovered that this discussion itself encourages readiness and openness when handled in a supportive and sensitive way. 

For example, you notice Mr. Arnold’s concern, and even some alarm, when you request permission to ask him a few questions about the care he would want if he were too ill to speak for himself.

“What are you saying, Doc?” A retired carpenter of 67 years of age, he wonders out loud: “Why are you asking me that? Is there something wrong? 

You confidently explain that this is part of routine comprehensive medical care. That you can be more effective if you understood what good care might look like for him if such an unfortunate circumstance ever occurred.

You then ask, “Who do you want us to talk to if you can’t speak for yourself?” 

He looks puzzled because “No one ever asked me that question before. I need a little time to think about it”. Yet, he admits to having some thoughts about the subject. The funeral for his next-door neighbor - he has known Jack for over 30 years - was last week. Jack had slipped in his kitchen, struck his head on the ceramic tile floor, and couldn’t survive the serious brain injury.

Mr. Arnold thanks you for bringing up this delicate issue, admitting that he didn’t know who to talk to. He had questions, but hadn’t realized until now how this concern was affecting him. 

You thank him, telling him you realize it’s not easy to talk about these things, and that it will help you do a better job taking care of him. 

  

Tip #2: choose a significant problem from your patient’s problem list.

I found it useful to explain current medical and health status to my patients when I framed it as a journey through their life. Where does my patient lie on this journey of early to middle to late and end-stages of their life, or of their chronic illness? Explaining and discussing their medical status in this way helped my patients to imagine prognosis. It helped encourage readiness and confidence. My patients felt better informed.  

I accomplish this task by selecting a diagnosis from my patient’s Problem List. From this listing of all the diagnoses and care issues I’m actively addressing, I choose one which I judge most likely to be life limiting. If I see none, like cancer or heart failure for example, I choose a frailty and aging issue. Diagnoses related to musculoskeletal or memory disorders come to mind. Over 50 percent of our patients will ultimately die from frailty or dementia.

Using this continuum, or chronic illness trajectory, idea helps your patient visualize where they stand in the present. It also provides a way for your patient to visualize the natural course of this illness over time to the end of your patient’s life; indeed, to visit their future. You have a way to educate your patient about symptoms and physical changes they can expect in future stages. You provide a way for your patient to tell you how they might adapt to these changes, what their fears and challenges might be, and what assistance and interventions they would need or prefer. 

This is the essence of advance care planning. The issue is no longer an abstract one, since you have a way to bring it down to earth. 

For example, Mr. Arnold has hypertension-induced heart failure with reduced ejection fraction among the issues on his problem list. Of those problems, you decide this one is most likely to be life-limiting for him.

You therefore build your advance care planning and patient education plans around this problem. Focusing your planning on one diagnosis helps you manage your time, and Mr. Arnold feels less overwhelmed. 

  

Tip #3: use chronic disease action plans to empower your patient.

You can empower your patients with self-management skills, and with the confidence to communicate their needs, values, and preferences.  

For example, you give Mr. Arnold a brief overview of the heart failure action plan. At each subsequent visit, you choose a single aspect of the plan to review in more detail. This way, Mr. Arnold comes to expect this as part of his routine visit.

He knows to bring his plan to each visit where he has recorded his daily symptoms, weights and blood pressures. You quickly review his understanding of actions he would take should he experience certain symptoms like weight gain or ankle swelling. You check his understanding of when an emergency visit to your office or even to the hospital is appropriate. 

You are able to educate Mr. Arnold about features of end-stage heart failure and even the dying process. He gets to learn when life-prolonging measures can offer benefit, and when symptom-focused measures (palliative and hospice services) can be more beneficial.

This gives you a context, over several visits, to educate Mr. Arnold. He in turn is able to process this information and to share his thoughts and preferences for you to document. 

The format of the action plan enables you, over time, to learn his hopes, fears, and confusion about elements of the plan. Mr. Arnold learns to make better, more confident decisions because the action plan helps him learn the skills to do his part, and to speak up if there is something he does not understand. 

You are giving Mr. Arnold a way to visit his future and to prepare for it; to make better decisions now, in the future, and even his last months, weeks and days.  You are helping him take responsibility for his health, with skills and confidence to succeed. 

The action plan gives you a platform for collaborative planning and decision making. And because Mr. Arnold has better decision making and self-care skills, he is less likely to choose unnecessary care. 

 

In conclusion: 

As you can see, these three tips can help reduce the stress of end-of-life advance care planning conversations.  

With them, we can reassure our patients that this is not a delivering bad news conversation. We give them information they can use that targets their needs. The action plan lets them tell us what they need. We don’t have to guess or assume.

This approach provides a foundation for shared decision making. It empowers our patients to make better decisions. This increases our chances of delivering care that truly matters, and that is more effective with less waste.  

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