The Patient Role in a Failure to Communicate

“Investing in ACP is perhaps the single most important thing we can do as a society and as stewards of our health care system to improve the quality of care from the perspectives of patients and family members and to reduce health care costs at the (end of life).”

     From “Failure to Engage Hospitalized Elderly Patients and Their Families in Advance Care Planning,” JAMA Internal Medicine, April 1, 2013.

By PAUL C. McLEAN

Community Voices in Medical Ethics

In coverage of end-of-life care in mainstream, medical and social media, some points are repeated so often, they go without saying at this point. Examples: doctors make different choices than their patients about aggressive treatment; people say they wish to die at home but more often die in hospitals; that too much money is spent in the final months of life for little or no therapeutic benefit to the patient.

Here’s another: Change won’t occur without improved communication about how we die.

All go without saying but bear repeating. These and other points about planning for end-of-life care are repeating with particular frequency, especially on Twitter, in the days leading to National Healthcare Decisions Day, Tuesday, April 16. NHDD is an annual effort to educate and inspire both medical professionals and the people they serve in making a plan for care (follow @NHDD on Twitter or www.facebook.com/nationalhealthcaredecisionsday).

The need for such an effort is underscored in a story by Cole Petrochko, staff writer at MedPage Today, about the Canadian study in JAMA Internal Medicine (see the JAMA story and its related commentary). The study reports that many elderly patients discuss their end-of-life wishes and values with family and friends, which is good. And that many don’t communicate this information to their doctor, which isn’t good. But the surprise was in the Petrochko’s focus on patient responsibility.

Clearly, beginning with its headline, the Canadian study puts the onus for communication failure on the physicians and medical staff, which might be where it belongs. They do hold the power in this relationship. But Petrochko casts the findings in a light that’s refreshing and maybe even bold, writing:

“Most patients and their families who were planning for end-of-life care did not communicate plans with practitioners, and plans that were communicated were not being implemented.” 

This may be the medical version of Don’t Ask, Don’t Tell -- if physicians don’t ask, patients and families don’t tell. But this information might shape decisions over your own care, with your own wishes and values, so why wait to be asked?

Clearly expressing wishes is especially important for elderly who do not want aggressive therapies that are not beneficial. As the authors in JAMA report: "Aggressive treatment at the end of life has been shown to result in poorer quality of life for patients and family members, poorer quality of death, negative long-term consequences for the family, and wasted healthcare resources."

Physicians need better communication skills, and yet, what is the patient’s responsibility for ensuring his or her values are reflected in medical documentation?

The recent experience of two colleagues from Community Voices in Medical Ethics, which sponsors this blog, illustrates the importance of communication skills among medical professionals. Both had medical emergencies, and one thought to communicate with the surgical team that she did not want multiple resuscitation attempts. But they wanted neither to hear this, it seemed to my colleague, or to abide it. Fortunately, her care never reached that point of desperation.

The other colleague, newly arrived in rehab with multiple injuries, was queried awkwardly and insensitively about her own resuscitation preferences. The line of questions caught her very much by surprise.

Both colleagues are healing, and both returned to Community Voices work with searing new perspectives on the value of communication skills.

Even physicians who are excellent communicators are at the mercy of the patient or family’s ability or willingness to engage a difficult subject, so it was good to see MedPage Today shine some light on patient responsibility in this conversation.

A Community Voices colleague reminds me that it’s all well and good to create an advance directive, and to put it in writing, but three key players need to know about it: the patient, the family, and the physician.

The NHDD website has numerous resources for understanding why the advance-directive process is in everyone’s best interests. For both practitioners and patients ready to engage, excellent resources also are available at theconversationproject.org -- including “How to Talk to Your Doctor”