Preparing for the Unknown: A Lesson in Palliative Care

During a recent lunch with my daughter, a senior at the University of Maryland, she shared her frustration with a question she often receives: “So, what are your plans for next year?” She commented that while her life experiences through present day have been memorable, each stage has been predictable. Now, for the first time, she has more questions than answers. This ambivalence – this fear of what’s ahead – leaves her afraid to welcome the next unknown phase of her life. 

Handling the Unknown in Health Care

Certainly, this fear of the unknown is not an emotion only my daughter can claim. As health care providers, we see this often with our patients. Whether handling a sudden diagnosis or managing a gradual decline, our patients are often at the entrance of this uncharted territory.

During a recent shift of mine, a 95 year-old woman came to the emergency room with a chief complaint of weakness. Five years prior, when she was no longer able to cook and shop for herself, she was transferred to an assisted living facility. At the time I saw her, she was unable to walk, even with assistance, and was bed-ridden for much of the day.

After running some routine tests to screen for treatable conditions, it quickly became clear that she had generalized fatigue not linked to a particular medical diagnosis. I explained that at her age, the body begins to decline. Her fatigue – and other concerns – would likely not improve. The best course of action would be to get her comfortable and into a safe environment.

Her response was astonishing. She remarked that when she turned 90, and her health began to decline, she discussed her wishes with her family and developed a plan for the future – the unknown future. “Each year I live after 90 is a blessing. If I get very sick suddenly, my family should know what I want. If I die gradually, I need to be ready for the support and help.”

This remarkable attitude had not begun at 90. She shared that in her late 70s and early 80s, she began accepting the concept that her life would eventually end and changes would need to take place to prepare for that. She traveled, enjoyed time with family, and today has no regrets. She and her family accepted my recommendations for a nursing home transfer.

Not all our patient encounters are this smooth. Days later, I saw a 93 year-old patient who, together with his family, refused to discuss his future. When he came into the ER with deteriorating symptoms, and after initial testing proved inconclusive, I shared that inpatient, complex testing would likely not change the outcome. I recommended he be discharged home and made comfortable. His family was upset that I was “giving up.” I explained that there are certain age related ailments and complications that do not come with medical interventions or “cures.” His family demanded that he be admitted into the hospital for further testing. Two days later, the man passed away in the hospital, without the comfort of his home and family.

The first patient considered the next phase. While she may not have known exactly what the next several days, months or years would look like, she was able to plan out the scenarios and found comfort in the next phase. In contrast, the second patient was not able to consider what his next phase of life could be. He, together with his family, was paralyzed by the “next phase” and therefore unable to make rational decisions. Who knows – perhaps the second patient would have liked to die in his home with his family around. Without the conversation, we will never know.

Palliative Care

Palliative Care and hospice are rooted in the philosophy that good patient care extends beyond a disease and its symptoms. Hospice care, however, is limited to patients with a life expectancy of less than 6 months. Palliative Care encompasses conditions that are life shortening but with no defined time frame. Patients who are in palliative care can still receive disease-modifying treatments – however, the goal is to provide a spectrum of care that can bridge a patient and their family from aggressive treatment to proper planning, acceptance and comfort.

What Does This Mean for Physicians?

As physicians, our goal is to help – to treat our patients and improve their condition. But, as we listen to our patients’ concerns and treat their ailments, we must remember that providing meaningful Palliative Care support, for some, may be the precise way we ought to help.

Many emergency medicine physicians who come into regular contact with elderly patients have not been trained in Palliative Care and do not feel comfortable engaging in this form of discussion. And we are not alone. Historically, the Palliative Care discussion has been left to the primary care physician or oncologist. However, times are changing. As providers, our job is to help our patients beyond simply curing their alignments. We must acknowledge their medical history, status, current diagnosis, and, when applicable, help them reach the next phase of their life.