Edith Bartlett loved books. For years, she was in charge of cataloguing new acquisitions at the local library in her New England town. Her only child, a daughter, was often the first to know which bestsellers the library had purchased, giving her a head start on checking out the most popular books. Together with her husband and daughter, Edith lived the picturesque New England life that could have been lifted from the pages of a John Irving novel.

But all that was a long, long time ago. The day I met Mrs. Bartlett at my hospital, she was an 89-year-old long-stay nursing home resident with moderate-to-severe dementia who was being transferred to my hospitalist service for shortness of breath. The fall foliage hikes and book readings by the family hearth were just memories now, ones that her daughter held on to dearly.

Unfortunately for Edith, she could no longer remember those picturesque scenes nor even the name of her own daughter. She was in a state of advancing dementia.

“Can you tell me a little bit about what your mom was like before all this?” I always began with the most innocuous of questions when speaking with family members before progressing to the more difficult questions about medical care. But we needed to move fast; Edith’s breathing was becoming more labored. “Did you and your mother have a discussion about what sort of medical care she would want in the event that her dementia progressed? Of what a good day might look like for her?”

When Edith first moved to long-term care, she was still in the early stages of dementia. A widow, she designated her daughter as her legal representative. Unfortunately, they never discussed what Edith would have wanted in the event she could not read her library books or go on fall foliage hikes. Edith and her daughter had signed the paperwork without discussing the values and priorities Edith would have wanted her daughter to consider when making medical decisions.

“We never really discussed what sort of medical care she would want. The long-term care home just gave us the papers, no other guidance. I really don’t know what to say,” her daughter replied. “Do everything.”

And indeed everything we did. Edith’s oxygenation was falling quickly. We placed her on a face mask and even attempted non-invasive breathing, but no luck. The anesthesiologist was paged and we quickly intubated Edith and brought her to the intensive care unit. She remained in our ICU for two more weeks. At the end of her stay, we had created a hole in her throat to place a tracheostomy and pierced her abdomen to insert a feeding tube. We had “fixed” Edith’s immediate problems and sent her back to her nursing home where they were able to care for just such chronically ill patients.

Federal and state regulations have already begun reshaping advance care planning in long-stay homes today. Every resident has already (or soon) will be required to have some advance care planning documentation in their chart. For most, this will mean designating a healthcare proxy.

Depending on the state in which the patient lives, that individual is called a “healthcare proxy,” “healthcare surrogate,” “durable power of attorney for healthcare,” “agent,” or something similar. This person speaks on a patient’s behalf about health decisions including the overall goals of care.

Although long-stay nursing homes that ensure every resident has a proxy documented in the medical record fulfills its regulatory obligations, it often falls short in ensuring that resident preferences are respected during transitions of care or when the resident becomes acutely ill.

Simply naming a proxy is not enough, because proxies are not always good at predicting what residents would have wanted, as the story of Edith’s daughter suggests. Without guidance from the patient, proxies are burdened with uncertainty. When a resident designates a proxy, the advance care planning process is not done; it’s just beginning. When planning for their own future care, residents need to ask four questions when choosing a potential health care proxy:

  • Does your proxy understand what your values and priorities are?
  • Will your proxy be able to separate his or her feelings from yours and act on your wishes?
  • Will your proxy be a strong advocate for your expressed choices even if others disagree?
  • Does your proxy live near your long-stay home and will he or she be available when you need help the most?

The issue of advance care planning is even more urgent for patients with Alzheimer’s disease, who comprise more than two-thirds of long-stay nursing home residents. Patients with Alzheimer’s disease need to have discussions with their proxies as early as possible in the course of the illness, when they are still able to express their wishes. The natural trajectory of Alzheimer’s disease includes losing the ability to make decisions. It is interesting to note that although nearly all family members of residents with advanced dementia state that comfort is the primary goal for their loved one, few residents actually receive comfort-oriented care at the end of life.

Residents in the early stages of dementia must reflect on what their medical preferences would be if they were unable to do the activities that give their lives meaning and joy. To be sure, these are difficult choices, but long-stay nursing homes should ask such residents questions like these: “What should the goals of care be when you are no longer able to speak? When you are no longer able to feed yourself? Should our focus be prolonging life, providing comfort, or something in between?” If proxies are to honor and respect residents’ choices at all life stages, they must receive guidance from the resident while he or she is able to express these preferences.

To surmount some of these challenges, I often encourage residents to use their mobile device or tablet to memorialize their wishes on a video, and to e-mail it to their proxy, family members and clinicians. Seeing someone actually explaining his or her wishes is much more informative and immediate for both doctors and families than a written document.

Long-term nursing homes need to re-orient their staff to not simply have residents designate their proxies or document medical preferences. Homes need to encourage residents to have meaningful and substantive discussions about medical care with their proxies, families, friends and clinicians to make sure that they get the care they want when they become critically ill. Sadly, many long-stay residents in America will never get around to any of these conversations, and most will suffer the same fate as Edith Bartlett did.

Angelo E. Volandes, M.D., is on faculty at Harvard Medical School and Massachusetts General Hospital. His book, “The Conversation: A Revolutionary Plan for End-of-Life Care,” was released in January by Bloomsbury Press.