What To Do When Dying

Tick. Tock. Tick. Tock. Tick…Tock

You perch on the edge of the chair with rigid arms and fidgety feet. Your eyes are drawn to the clock face and its stiff second hand jerking between invisible numbers. Tick. Tock. Tick. Tock. 

Time has become so meaningful to you that you are deeply aware of each instrument in which it is measured. Ticking clocks, trilling alarms, and calendar pages that you rip from their spiral prison become your focus. You count the sunrises and mourn the sunsets for night has become a place of fear. 

Time stopped for you when you were first diagnosed. The immutable truth of your mortality was forced upon you by words you did not expect to hear. Then time raced as your battle began. Now, it stops and starts and stutters along with this pilgrimage across barren lands. 

Many are there with you, even in this moment, waiting to share your heavy burden. You struggle to share what you don’t even understand. Death is certain. Yet, in its certainty, it is also incomprehensible to imagine you actually arriving at its door. Therefore, time becomes your imminent companion to warn you of its approach. 

You are given time and plan accordingly. Yet, the waiting pain surpasses the dying pain. You have bound yourself so tightly to death that you have forgotten to live. You are a dead man watching time. 

What to do when Dying

If these words resonate with you, you are not alone. As a physician for over three decades, I have been with thousands in their living and dying journey. The majority of these have been encountered in the foreign land of a hospital. 

Patients have a brush with their own mortality when they enter a hospital. They forego all sense of dignity as belongings are passed to the busy ones and clothing is replaced with conformity in ubiquitous sterile gowns. A band is placed on one’s wrist to identify who they once were. 

Most will escape with their life. Some know it may not be true for them. Others find themselves in a revolving door at the hospital more often spit back into the bowels of the hospital than exiting into the comparatively sweet aroma of fresh air and freedom. 

I have had countless encounters with this latter group and most feel helpless in their circumstance. They are told to keep fighting their disease as if surrendering to the ravaging effects of its warfare is a failure on their part. They are told to keep fighting for the loved ones who surround them with tear-stained faces, hoping for miracles. They are told to keep fighting for their time which has become an unknowable force of good or evil depending on the day. 

It is impossible to characterize the weariness that accompanies all of this fighting. However, its effect is evident each time that same patient crosses my path. Sallow skin, slumped shoulders, feet drag along the ground from step to step and thinning bodies take up less space on the stretcher or bed where I go to speak to them. 

The time I have with them is brief but intensely personal. A day in the hospital with clinicians who listen, and care, when a patient is most vulnerable can become an opportunity for the patient to express his or her wishes regarding the fight. I find it deeply comforting for the patient to have some sense of control when facing death. This truth reigns if time is long or short. 

With the context of hours upon hours of these conversations, let me share the pilgrimage of others about what to do when dying:

Prepare

I have yet to meet a patient or his or her family that regrets the amount of time they spent preparing for the knowable and the unknowable. Yet, I have witnessed carnage from those who arrive at “death’s door” with no thought to the possibility of needing a plan. 

If the patient is able to make healthcare decisions, the complexity of those decisions is not always understood. Often, the patient is seen by unknown clinicians, and time skips by in brief hospital visits while unasked questions form and are forgotten. 

The relationship of trust is crucial between patient and doctor and developed over time with those who the patient is familiar. However, trust can become extraneous in the hospital setting. Without trust, fear may reach monumental levels as decisions must be made. 

You cannot prepare for every eventual possibility, however, you can prepare for the most likely. Preparation takes time and help from friends, family, your faith community, and your trusted professionals. 

If you are unable to voice your wishes, those who will be your advocate, including your healthcare proxy, will benefit greatly from your well-prepared Advance Care Plan. 

Preparing now will give you autonomy at a time when it seems everyone other than you is speaking about you, for you, instead of you. Every moment you prepare now will be yours and your family’s reward one hundred-fold when it is needed.

The benefits of ACP for individuals, families, and society at large are well documented. These include the following: 

• Higher rates of completion of advance directives (i.e., Living Will, Healthcare Power of Attorney, Combined Advance Directives)
• Increased likelihood that clinicians and families understand and comply with a patient’s wishes
• A reduction in hospitalization at the end of life 
• The receipt of less intensive treatments at the end of life
• Increase of hospice services
• Increased likelihood that a patient will die in his or her preferred place
• Higher satisfaction with the quality of care 
• Better family preparation on what to expect during the dying process
• Lower risk of stress, anxiety, and depression in surviving relatives of deceased persons

There are many sources for Advance Care Planning, however, I have found the Five Wishes to be the most comprehensive and affordable. For the price of a fancy latte, you will have a legal document with which to work. The site has guides for completing the document, however, discussing it with your family and your clinician is also important. 

There are many preparations beyond healthcare choices that you, we, all should consider in light of the unyielding certainty of physical death. Beginning early in preparation for facing death isn’t morbid, it’s wise. 

Prepare

PLAN FOR LIVING

RESTORE RELATIONSHIPS

REMEMBER FOR FUTURE GENERATIONS

BELIEVE AND WORSHIP

EQUIP FOR THE FUTURE

BE FLEXIBLE

ANSWER THESE THREE QUESTIONS

COUNT THE COSTS – IF I DO (A), HOW DOES IT AFFECT (B)

TACKLE YOUR FEARS

WHY ARE YOU FIGHTING SO HARD

COMMUNICATE YOUR COMFORT NEEDS

DIE LIVING

Thank you for reading my blog! I’m Dr. Pamela Prince Pyle, a hospitalist specializing in death, grief, and suffering with over thirty years of experience. My upcoming book, “Anticipating Heaven,” is set to release in January 2025 and explores the intersection of faith and medicine in approaching life’s final chapters. If you or a loved one have received a serious diagnosis, I have resources to help you navigate this challenging time. Please feel free to contact me with any questions or to share your story. Your journey matters, and I’m here to support you.