Take as Needed

How to become an effective caregiver for your loved ones.

Posted Jul 09, 2018

 During my later years as a practicing cardiologist, I specialized in caring for patients with what we call “heart failure.” About 5 million individuals in the United States have some form of heart failure. At a medical center with a heart transplant program, this specialized practice means seeing a large number of new referral patients and evaluating not only their cardiac situation, but their family and social needs as well. Probably the saddest words that I heard, and I heard them often, were, “My doctor says there’s nothing more (s)he can do for me.”

After a couple of years, I began to answer, “I’m sorry, but I think (s)he means, “There’s nothing more I can do to you. But there’s always something we can do for you.” Whether as patients —which we will all be—or family, or professionals, we have to be constantly aware of the difference between those two statements, and of the profound difference between the two attitudes.

The statement that “There’s nothing more I can do …” sends the message that the speaker, the “I” — the one who is doing—has exhausted his or her repertoire of things to do, tests to run, and prescriptions to write. The statement focuses the patient’s attention on the speaker and his or her frustration and need to feel in charge.   

On the other hand, when there’s a checkmark to indicate “done” beside every guideline-recommended diagnostic and therapeutic maneuver and a patient continues to deteriorate, we cardiologists have to talk about caring for the patient, not the disease. We can talk openly about the fact that death is drawing near and ask the patient, “How can we help?”  It’s time to do some important things: turn off the implantable defibrillator, make arrangements for hospice care, and make sure that everyone knows not to call 911.

Dr. Chris O’Connor, a widely respected heart-failure cardiologist, edits the Journal of American College of Cardiology: Heart Failure.  He wrote wisely about Barbara Bush and her death in the most recent issue[1]. “This event [Mrs. Bush’s death] reminds us of the importance of caring for the complete patient, and understanding patient and family needs, as well as quality of life as a priority over quantity of life in this type of circumstance." Chris went on to quote data from two recent studies[2],[3] showing the efficacy of palliative care strategies.  “Patients [receiving palliative care] had an improvement in the Kansas City Cardiomyopathy Questionnaire quality-of-life scale that was measurably much larger than that seen with most pharmacological and device therapies. In addition, depressive symptoms and anxiety were significantly reduced with the palliative care strategy versus usual care.”

Often healthcare professionals see death not as an inevitable part of life, but as an intellectual defeat. That’s unrealistic, and can play a part in prolonged, futile ICU stays. As Chris noted, “In the last 6 months in the life of a patient with heart failure, an enormous amount of resources and dollars are spent providing care that may have limited opportunities for improving long-term outcomes. Palliative care and hospice are often not instituted early in the last 6 months of life, and many times not at all.”

When “caring for” the patient supersedes “doing to” the patient, the patient’s extended family has to be engaged. Cardiologists or primary physicians can’t always do this alone. Social workers, pastoral care, and palliative care specialists can help. If “doing everything” becomes a way for a family to avoid interacting with the patient, social isolation and lack of social support may worsen depression and anxiety.  

Barbara Bush and her family set an example of effective end-of-life care that physicians should strive to deliver, and that we all should hope for in similar circumstances.

 

References

[1] O’Connor CM. Dying With Dignity and Heart Failure. A Lesson from Barbara Bush. JACC: Heart Failure 2018; 6:536-7

[2]Rogers J.G., Patel C.B., Mentz R.J., et al.   Palliative Care in Heart Failure: the PAL-HF randomized, controlled clinical trial. J Am Coll Cardiol 2017; 70:331–341.

[3] O’Donnell A.E., Schaefer K.G., Stevenson L.W., et al. Social Worker–Aided Palliative Care Intervention in High-risk Patients with Heart Failure (SWAP-HF): a pilot randomized clinical trial. JAMA Cardiol, [E-pub ahead of print]. 2018 Apr 11.