The Aging CHD Patient: The Facts, Part 2

As I wrote in the first part of this post, talking about heart failure brings up a topic that is seldom discussed in the ACHD world—end of life (EOL) care. Do ACHD patients want to discuss EOL? According to Dr. James Downar, they do.

Here are some facts he presented at the 25th International Symposium on Adult Congenital Heart Disease last week:

1. 50% of ACHD patients have talked about EOL preference but only 1% recalled ever discussing that with their doctor
2. 78% of patients want the doctor to bring it up and 62% want early discussion.
3. Doctors are more hesitant.
   • 50% of ACHD doctors report discussing EOL routinely.
   • 38% report they have “early” discussions
   • Often these discussions require a key event—refused for transplant, surgery, acute hospital admission, etc.

So you might ask, why are EOL discussions not happening? Dr. Downar says that ACHD patients’ goals are often not reflective of the reality of their illness. ACHD patients assume they will have a normal lifespan, but we also know:

1. “Miracle” outcomes still can die young.
2. Congenital heart failure (HF) patients don’t associate symptoms of HF with progression of disease.
3. There is still a flawed belief that they are “cured” and this results in worse quality of life.

What are some of the reasons why EOL discussions are important? They allow for a “good death,” as opposed to a “bad death.” They show respect for the patient’s dignity by recognizing that they are dying and developing a plan of care based on the patient’s desires. They also avoid what we know as “default pathways of care”—ICU stays, respirators, and resuscitation efforts—and allow the use of palliative care.

Dr. Downar reports that without EOL discussions,

1. Patients have lower quality of life—they die where they don’t want to be.
2. Patients have shorter survival.
3. Depression and anxiety is seen in the family.
4. There is staff burnout.
5. Costs are increased.
6. There is poor recognition of dying trajectory.

The best communicators frequently tell us what we want to hear, not what we should hear—the truth. As an adult with CHD, I encourage you to always seek the truth about EOL issues.