Patients with end-stage disease often find themselves in uncomfortable beds in sterile rooms characteristic of modern hospitals. Many of these arrive with a flurry of activity and symptoms associated with complications from treatments at life’s end worse than the end of life. This is our cautionary tale:
The patient is tethered to a runaway horse attempting to escape death. Sometimes, the patient has climbed willfully onto its saddle, but is surprised as the doctor slaps the flanks, sending the horse and rider on a panicked gallop.
Other times, family members help them up and then race to keep pace. Their desire to be by the side of their loved one for just a little bit longer trumps all emotions and logic. Doctor and family lead them on this ephemeral escape from the grave.
Ultimately, the horse will throw the patient and they roll into the emergency department. The doors close rapidly as frantic clinicians fight to block death from these hallowed grounds. Clothes are cut off, machines are started, then more noise, chaos, crying, pain, and ultimately, always, quiet.
A solitary tear slides down the patient’s cheek as they look through the window at the horse. Unnoticed until then, the reaper’s scythe can be seen in its dark eyes and its flesh has been seared with the word, “Death.”
Life vs. rest
This tale may seem overly dramatic. Yet, as a hospital-based physician for over thirty years, I have seen the foundation of this tale time and time again. The patient with end-stage disease may sense the failing of their physical body. He or she grows weary as the fight for life is trumped by the fight for rest.
Yet, the patient may have difficulty voicing these hidden thoughts. In part because hope exists that the thoughts are wrong or once spoken that confirmation ignites the fears which accompany them.
Clinicians, caregivers, and loved ones must be especially sensitive to the patient with end-stage disease who needs to discuss the end. Navigating the emotional turmoil of a patient preparing to accept the battle has been lost requires time and open dialogue.
Having the discussion
Encourage your loved one to talk about important things: “What are your fears? What are your hopes? What are your wishes?” Navigating your loved one’s needs over your own breaking hearts requires a sacrificial love. Yet, by doing so your fears may also be spoken. Your needs may also be met.
Five Wishes provides a foundation to discuss what matters. Upon this strong foundation, the shelter can be built to meet the needs of the individual patient. It is crucial to have this foundation as early as possible. Discussing these matters before a crisis prevents the duress of our cautionary tale. This is love amid loss.
It is also important to communicate these wishes to each person in the patient’s life. This is the role of the healthcare proxy or another close family member. The chain of care must be adequately informed lest the patient be pulled from their well-planned shelter and placed upon The Runaway.
(Dr. Pamela Prince Pyle is a South Carolina Board Certified Internal Medicine Physician practicing in acute care and author on topics related to Living with the End in Mind. Contact her at www.drpamela.com.)