As we come to terms with Mom’s failing lungs, my family soon may face decisions about procedures that could prolong her life. Many of these medical procedures, which were not available to generations before, leave me wondering whether I will know when the time will be right for Mom to die.
Resources on End-of-Life Decisions
As I try to think ahead to prepare for these decisions, I find myself seeking information from a variety of sources, ranging from friends who have experience in caregiving, books on end-of-life and spiritual issues, magazine articles, radio programs, and a wide variety of information available on the Internet.
I recently read an essay from New Yorker staff writer Atul Gawande’s new book Better: A Surgeon’s Notes on Performance, which was published earlier in April. Dr. Gawande is a surgeon and professor at Harvard Medical School. In his essay "On Fighting," Dr. Gawande discusses the medical and ethical dilemmas that doctors encounter in relation to treating people with serious illnesses. His thoughts resonate since I have been thinking a lot about this particular topic since Mom’s health began to deteriorate, first with her lungs (and related issues) starting in 1997 and then with her mental lapses prior to her Alzheimer’s diagnosis in 2005.
In watching Mom’s decline, I’ve had to start coming to terms with her future demise and the need to let go at some point. But will my family and I, along with the doctors, know when that point has arrived? And will we be able to let go?
The Last Six Months of Life
Noting that we rarely know when people’s last six months will be (which is when the largest expenditure of funds related to health care are utilized), Dr. Gawande writes, "In the absence of certainty, the truth is we want doctors who fight." Later in the chapter, he explains, "The seemingly easiest and most sensible rule for a doctor to follow is: Always Fight. Always look for what more you could do. I am sympathetic to this rule. It gives us our best chance of avoiding the worst error of all – giving up on someone we could have helped."
But with someone who is faced with the downslide caused by Alzheimer’s disease and Chronic Obstructive Pulmonary Disease (COPD), when is the time right to give up? Another article that I recently read provided a counterpoint to Gawande’s chapter. This particular expert mentioned the tendency in Western civilizations for people to talk about death in relation to "if I die" (as opposed to "when I die"). In my mind, the use of "if" (instead of "when") underscores the quandary that Dr. Gawande examines.
Dr. Gawande shares several stories in which doctors were able to solve difficult health issues, but he also includes stories where these attempts have led to great tragedies. In these cases, the medical community, in particular, appear to be thinking about their patient’s death as an "if" that they can control instead of a "when" that is inevitable. Some patients as well as caregivers who are described in the chapter also take the “if” approach.
As our family grapples with the decisions about Mom’s health, most recently with the feeding tube decision, I find that I am resigning myself to thinking about “when” Mom dies. We know that Mom’s lungs are failing and that her mind is becoming increasingly confused. We also know that Mom would not want to live this way; she was adamant with my father, brother and myself for the past 15 years about what she wanted if and when she reached this situation. I (and the rest of my family) want to honor her wishes.
As hard as it is to face, I also find that by using the word "when" in relation to Mom’s death, I can reflect on the impact she has had on this world as a whole, as well as the impact on individual members of our family. By doing so, I also find that I am able to start getting closure on Mom’s life, even though she hasn’t left us yet.
Ecclesiastes 3:1-8 provides some comfort as I think about Mom’s situation. The message is timeless in illustrating the transition Mom will be making soon:
To everything there is a season, and a time to every purpose under the heaven:
A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;
A time to kill, and a time to heal; a time to break down, and a time to build up;
A time to weep, and a time to laugh; a time to mourn, and a time to dance;
A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
A time to get, and a time to lose; a time to keep, and a time to cast away;
A time to rend, and a time to sew; a time to keep silence, and a time to speak;
A time to love, and a time to hate; a time of war, and a time of peace.
I choose to use the time that I have remaining to love Mom and to realize that her death is fast approaching. When it comes, I hope to have the strength to realize that it is time to let her go. And I want to honor her wishes in that it’s not a case of "if"; instead, it’s a case of "when."
For More on End-Of-Life Issues, please read:
Dorian Martin writes about various topics for HealthCentral, including Alzheimer’s disease, diet/exercise, menopause and lung cancer. Dorian is a health and caregiving advocate living in College Station, TX. She has a Ph.D. in educational human resource development. Dorian also founded I Start Wondering, which encourages people to embrace a life-long learning approach to aging. She teaches Sheng Zhen Gong, a form of Qigong. Follow Dorian on Twitter at @dorianmartin, Facebook or Instagram at @doriannmartin.