Tips and Tricks for Wellness; Grace in End-of-Life Decision Making
“It is in the face of death that the riddle of human existence becomes most acute.” -Pope John Paul II
With Easter on the horizon, we at Ally RN thought that now is a wonderful time to address a difficult subject: Grace and Dignity at End-of-Life.
If there is one thing working in an ICU teaches a person, it is that life is so very fleeting! Things change in an instant. (And wow, do they change in a 12-hour shift!) No matter your age, the time is now to speak with your loved ones about your wishes and priorities for end-of-life care.
These topics can be uncomfortable and overwhelming. But not knowing your unique priorities and desires when your loved ones are called to make decisions for you is infinitely more uncomfortable and overwhelming- even downright crushing! There is peace, grace, and dignity to be found in knowing your wishes or the wishes of those you love. So, let’s dig in!
Note: There are many resources available to assist you with creating Advance Directives and other pertinent legal documents. This blog is intended to help pinpoint your unique preferences in medical decision-making. What one person considers dignified, another person may consider distressing. The following will help you and your loved ones arrive at greater understanding, and therefore, peace.
The Not-So-Basics: Quality of Life vs. Quantity of Life
Some people desire to extend their lives here on Earth for as long as possible, regardless of the measures required to do so, even if these measures sacrifice quality of life. This is considered having a high regard for quantity of life. Other people would forsake extreme measures, sometimes sacrificing time here on earth, in order to live out their lives achieving certain abilities such as communication with family, independent mobility, or any other subjective marker of well-being. This is having a high regard for quality of life. For most people, their desires lie somewhere in the middle, or with some combination of both. Knowing where someone falls on this vast spectrum is hugely important to end-of-life decision making, and can ensure dignity for the sick or dying. Here are some questions to help identify personal values and priorities:
Think of someone close to you who required care at the end of life. What did you like about it? What would you change?
Would you want to live for as long as possible, regardless of the medical interventions required to do so?
List of medical interventions to ponder: CPR, Ventilator, feeding tube, IV hydration, dialysis, blood transfusions, receiving donated organs or other tissues
Go through the list of interventions, and consider whether they seem extreme or reasonable for a short duration of time in order to restore health, such as in instances of sudden illness, surgical complications, or injury.
Now go through the list again, considering whether the interventions seem extreme or reasonable for an indefinite and prolonged period of time. Example: Someone may consider the use of a ventilator reasonable in order to recover from surgery or pneumonia, but extreme in order to keep breathing for the remainder of their lives following recovery from surgery or pneumonia
What aspects of well-being are most important to you? Examples include prayer, religious customs, time spent with family, awareness of the world around you, ability to speak, ability to perform personal hygiene routines independently, etc.
What spiritual traditions would you like in cases of severe illness or during end-of-life care? (Last Rites)
If you were no longer able to care for yourself, what routines would be important for your loved ones to continue to maintain for you? (Holy Eucharist, time spent outside)
If you needed around-the-clock care, is there a particular location you would prefer to receive it such as your home, or a specific nursing home?
Are there any daily care or other basic interventions you would not want?
Are there certain medications you prefer not to have?
If possible, where would you prefer to spend your end-of-life? (Home, hospital, hospice)
Would you like to be an organ donor?
What details are important or unimportant to you for funeral services, cremation, or burial?
A Note on CPR
Cardiopulmonary Resuscitation (CPR) is the lifesaving intervention performed when someone’s heart stops beating. Successfully regaining a heartbeat is not guaranteed in CPR (although your healthcare providers will try their hardest!). CPR involves rigorous chest compressions, defibrillation, and rescue breathing. It is important to note that CPR outcomes vary significantly depending on factors such as age, health, frailty, and specific medical conditions. This means that CPR for a 50-year-old, healthy adult is going to look entirely different than CPR for a 90-year-old. Generally, the more medically frail a person is, the greater number of extraordinary measures required to maintain life following successful CPR. At a minimum, patients typically require a ventilator and numerous medications. Because of these factors, the desire to have or not to have CPR may change as a person ages. The conversations surrounding your wishes should not be limited to one instance, but should continue as needed over the lifespan.
Whew!
Take a deep breath, and give yourself a pat on the back! You made it through the tough stuff!
In closing, we want you to know that each human life is so amazingly complex and unique, with its own special family, cultures, spirituality, and experiences, and therefore there are an infinite number of factors that may come into play with these situations and decisions. We invite you to lean on our experience and expertise in order to help simplify this vast subject area. We are happy to guide difficult conversations or to look at existing legal documentation and offer a clinical and/or religious perspective. Sometimes, all that is needed is assistance in “breaking the ice”, and we can help with that too! Contact us today so we can be by your side navigating these subjects, and share with your loved ones to get the conversation going!
Wishing you a Very Blessed Lenten Season,
Kathleen Clark, RN, BSN
Founder, CEO, Ally RN