Dr. Eleanor Barbera

Assistance in creating a “good death” is a fundamental task of any organization working with elders and may be addressed by a number of team members singly or in combination. Since these discussions are often easier said than done, I thought it might be helpful to share some of my experiences since I, as a geropsychologist, regularly discuss dying with residents and their families.

It’s a more-than-timely topic. As I once wrote in my column, “Creating better deaths in long-term care,” end of life care has been the subject of increased media attention in recent years. The importance of a conversation or series of conversations about the resident’s wishes has been emphasized by organizations like The Conversation Project and writers such as Atul Gawande, M.D. in his bestselling book, “Being Mortal.”

Here’s some added perspective. Not too long ago, I was checking the medical orders in a long-term resident’s chart when I noticed that she was “full code.” Bernice was 92 years old with a history of chronic illnesses and a recent decline in functioning.

While many residents have advance directives that prohibit care in the event that breathing or the heart stops (such as a Do Not Resuscitate order), full code allows for all interventions needed to restore breathing or heart functioning, including chest compressions, a defibrillator and a breathing tube.

I thought of the distraught expressions on the faces of the nurses who had rushed to provide full code care to Jim, a frail elderly man who’d been a staff favorite during the course of his stay. The full code was at the insistence of his son, who couldn’t bear the thought of his dad’s passing. Jim’s ribs were cracked, the effort was unsuccessful and the nurses were devastated – at having to perform the procedure, not because Jim had died. It was obvious to everybody in the nursing home that Jim had been dying for months despite his son’s desire to forestall the inevitable.

Mindful of Jim’s painful demise, I raised the issue of advance directives with Bernice, asking her if she knew what “full code” meant and if she’d given any thought to how much medical treatment she wanted at the end of her life.

“What will be, will be,” she told me. “I don’t want to talk about it.” Her tone made it clear that persistence would be futile.

“There’s a lot more to it than that,” I replied, “but we don’t have to talk about it today.” I made a mental note to pursue the topic when she seemed less inclined to throw me out of her room.

“What will be, will be,” makes it sound like dying is an act of God, out of our control. Once in a medical setting, as many readers know, “what will be” is a barrage of medical procedures unless the resident or their family tells the team to stop.

Down the hall from Bernice was another nonagenarian, Carlos, who’d recently arrived at the facility and told me he’d “had enough.” He wasn’t suicidal, but he wasn’t interested in prolonging his life. When I told him he had a full code order in the chart, he said he’d talk to his wife about it, but he didn’t.

As luck (or divine intervention) would have it, his wife called during our session two weeks later. He handed me the phone and said I could address the topic with her.  

“We signed those papers already!” she shrieked. “We don’t want any of that stuff, we already told them!” I recommended she speak with the social worker and by the end of the day there were doctor’s orders reflecting advance directives consistent with Carlos and his family’s wishes. Carlos passed within the week.

When I spoke with the social worker about the situation, she remarked upon the fact that despite being told, many families don’t understand that new orders are needed to establish advance directives between facilities such as hospitals and SNFs. The requirement forces individuals and families to revisit an emotionally fraught subject in the middle of yet another transition and providers to be more proactive and persistent in addressing it with them.

Not long after Carlos’ death, I returned to find Bernice in a more receptive mood and I broached the topic of end of life care again. I explained what full code meant and asked her if she was sure she wanted it. “Yes,” she said emphatically. “I want them to do everything they can to keep me alive until I’m one hundred.” This concluded our consideration of the matter for the moment, with seeds planted for future discussion. If, for example, her health deteriorated further, I’d raise the issue again if she didn’t.

There’s much more to say about these conversations, but these three stories capture many of the situations encountered in LTC. Presenting residents and their families with information, respecting their decisions, and making sure orders are in place that reflect their wishes are essential aspects of providing good end of life care.

Facilities also might consider providing or referring families for counseling to address anticipatory grief (grief in advance of a loss) that might be impacting their ability to make reasoned decisions. In addition, staff members, who usually deal remarkably well with the constant losses in LTC, may need support such as a supervised team meeting to address traumatic deaths of residents.

As providers of long-term care and experts in end of life services, our residents, families and staff are counting on us to guide them through this season of life and there is much we can do to be remembered for having done so.

Eleanor Feldman Barbera, Ph.D., author of The Savvy Resident’s Guide, is a 2014 Award of Excellence winner in the Blog Content category of the APEX Awards for Publication Excellence program. She also is the Gold Medalist in the Blog-How To/Tips/Service category of the 2014 American Society of Business Publication Editors Midwest Regional competition. A speaker and consultant with nearly 20 years of experience as a psychologist in long-term care, she maintains her own award-winning website at MyBetterNursingHome.com.