Palliative care as a true art form

How do you ease the pain from an ailment amidst lost words? How can you serve the afflicted when lines start to blur? When the foundation of communication begins to crumble, what will be the pillar health-care professionals can lean on to support patients afflicted with dementia during their final days?

The practice of medicine is both highly analytical and evidence based in nature. However, it is considered a “practice” because at the highest level, it resembles a musician navigating an instrument. It resembles art. Between lab values, imaging techniques and treatment options, the nuances for individualized patient care so often become threatened.

Dementia, a non-malignant terminal illness, involves the progressive cognitive and social decline in those afflicted. Though there is no cure, dementia is commonly met in the setting of end-of-life care. During this final stage of life, the importance of comfort via symptomatic management and communication usually is a priority in patient care. But what about the care of a patient suffering from dementia? While communication serves as the vehicle to deliver care at a high level, medical professionals are suddenly met with a roadblock. And there … behind the pieces of shattered communication and a dampened map of ethical guidelines, health-care providers are at a standstill.

It’s 4:37 a.m. You receive a text message from the overnight nurse at a care facility regarding a current seizure. After lorazepam is ordered and administered, Mr. H, a quick-witted 76-year-old, stabilizes. Phenobarbital 15mg SC qhs was also added to prevent future similar events. You exhale a sigh of relief.

Mr. H. has been admitted to the floor 36 hours earlier after having a seizure while playing poker with colleagues. Since he became your patient, he’s shared many stories from professional and family life with you, along with as many jokes as he could fit in between. However, over the course of the next seven days, Mr. H. would develop aspiration pneumonia, progressing to ventilator dependency and, ultimately, multi-organ failure with rapid cognitive decline.

What strategies and tools would you use to maximize the well-being of your patient during his decline? How would you bridge the gap of understanding between the patient’s family and health-care team to provide the standard of care that all patients are owed?

To give Mr. H. the type of care he would have wanted, upon his hospital admission, he should have been questioned about his understanding of illness along with the goals of care of the medical team. The patient should have been informed that it is imperative to adhere to the medical regimen implemented by his team along with the risks of not doing so. In the event disease-related complications arose, advanced directives should have been documented to avoid any unnecessary measures.

It is important to note, that with each change in status of the patient’s health status, the goal of treatment must be reassessed. The patient or surrogate decision-maker’s understanding of these goals is paramount in maintaining the patient’s autonomy. It is often said that effective communication is the bedrock of a healthy relationship. This is true regardless of type of relationship.

This is why I and Megan Vierhout wrote Integrated End of Life Care in Dementia: A Comprehensive Guide, a book targeted at providing a much-needed road map to navigate the many challenges involved in end-of-life care for individuals with dementia. Ultimately, our aim is to provide a compass for both health-care professionals and the families of those affected by the progressive effects of dementia. We provide practical advice on optimizing communication with individuals with dementia while taking their cognitive limitations, preferences and needs into account.

I invite you to explore the unpredictable terrain of end-of-life care for patients with dementia. Together, we can pave a smoother, sturdier path toward the practice of medicine as a true art form.