Sharon was dying. The weight of this reality hung in the air. Cancer had come and gone and returned with a vengeance.
Through it all she had carefully considered each treatment decision and weighed the various therapeutic options.
Nevertheless, an unexpected complication resulted in a devastating consequence. Her family stood by, hoping for her to wake up. They yearned for more time to hear her voice and her wishes. They had expected more time to make these decisions, and they were now ill-equipped without her wisdom.
A Common Story: Making End of Life Decisions for Family Members
I spoke daily with Sharon’s family, as did the other physician involved in her care. We understood the difficulty the family now faced. We had been in many family consultations such as those we were having with Sharon’s family. A serious diagnosis or tragic accident rendered the patients unable to speak their wishes, and their families struggled with chaotic decision-making.
In some cases, the answer was clear to everyone involved. In others, such as Sharon’s case, the family was in turmoil. She had completed an Advance Care Plan early in her cancer diagnosis. She had spoken with her family about this plan. However, everyone expected an ending they would see coming, not the one they were given.
Time and Trust
When families are faced with making decisions about withdrawal of care, there are three approaches I use to help guide them. Families can utilize this decision tree for their individual circumstances.
- Work the Plan: Even if the patient left only a rudimentary end-of-life plan, it can become a starting point for care decisions when the patient is unable to participate in choices. In Sharon’s case, she had chosen not to have any life-saving medical interventions. Each family member understood this, and yet now in the chaos they wanted it all done. From the family’s perspective, they hoped for more time. Reality had not yet set in.
- Develop trust: Trust is the most valued commodity between clinicians and patients. Developing trust in a medical crisis still requires time, patience, and often more than one physician offering their perspective. You will be surprised by the trust-bond created by the simple question, “What would you do if this were your spouse?” If he or she is not married, ask who they would want to make this decision for them.
- Consider the Patient: If the patient has not completed an Advance Care Plan or communicated clearly his or her wishes for end-of-life, gather the people who know the patient the best. Consider the following questions:
- How did the patient value quality of life vs. quantity of life?
- Did the patient discuss being prepared or getting ready to go?
- Did the patient begin giving items away or planning for a will or funeral?
- Identify the patient’s belief or faith. Be prepared to answer questions surrounding faith.
Despite this approach to making end of life decisions for loved ones, the weight of a final decision to withdraw artificial life support or to transition to Comfort Measures Only can feel heavy.
Sharon’s family had been told that she would not have meaningful recovery. She had planned for an ending on her terms, but this was no longer an option. Another physician and I sat together in the crowded consultation room. We both agreed that withdrawal of high acuity care was indicated and explained the reasons. However, families understandably struggle when decisions like these must be made.
The Most Important Thing You Should Know About End-of-life Medical Decisions for Family and Friends
Early in my career I also struggled with these conversations. I could present the science and statistics, but that does not begin to explain the nuances of patients’ lives at the end-of-life. Some last longer than expected, while others with the same data set die quickly. It is a road fraught with the unexpected, and absolutes can give false hope or false despair. I began to find comfort in Scripture and God’s sovereign Word, and this has allowed me to share comfort regardless of the faith experience of patients and their families.
“Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.”
“A person’s days are determined; you have decreed the number
of his months and have set limits he cannot exceed.”
“Is there not an appointed time to man upon earth?
Are not his days also like the days of a hireling?”
“If a man die, shall he live again? All the days of my appointed
time will I wait, till my change come.”
Preparing for Death by Living with the End in Mind
My faith gives me confidence that the number of our days is ordained by God. When I speak with patients, families and healthcare proxies regarding end-of-life care options, I add the following, “My faith comforts me with the belief that while we can’t control how many days of life we get, we can always choose how we will live those days.” I find this simple statement brings a visible sigh of relief as families are making decisions regarding level of care.
As a person of faith, I believe we are the beloved creation of an intelligent, all-powerful Designer. I see no contradiction between the principles and facts of science and the idea that an all-knowing Creator would know the exact number of my days.
I prefer to think of our lives as books. Our daily choices and actions determine what gets written on the pages of our lives, but the Author of life determines how many pages are in each of our “books.” In short, my faith gives me both peace and a confidence to comfort patients and family members as they walk through their final season.
This is not to affirm the choices of suicide or euthanasia. While the date of either is the patient’s day of death foreknown by God, the psychological consequences for those left behind can be tragic and unresolved. Choosing withdrawal of care resulting in a natural death is entirely different than an active intervention meant to cause death. Society cannot fully understand the ramifications of euthanasia or the slippery slope to which it leads.
During these end-of-life decisions, patients and families need clinicians who will guide them. They don’t need someone to lead them (make decisions for them), and they don’t need someone to follow them (they make all the decisions). Regardless of their faith, they find comfort in my faith, that I believe they are not taking or adding a day to the life of the patient. They are deciding what that day will look like.