Death and dying are curious concepts. The one universal thing that every human being shares, regardless of gender or culture, is death. And until that time comes, most of us are faced with the loss of others we love. Yet, in our American culture, the topics of death and dying are taboo.
When we are young, most of us feel invincible. We can’t imagine our mortality and don’t want to be bothered with thinking about it. However, if we give these tough concepts our attention while they are still “theoretical,” and not when we’re mired in the emotional thick of it, we will set up a good foundation for sound decisions when actually facing them.
You or someone you love will likely be thrown into a situation where you confront decisions you feel unqualified to make. In 2010, in my early 40s, my husband, Tim, and I were living our “normal” lives — working, taking care of kids, and managing our home — when Tim had some strange sensations in his side. He went in for a routine gallbladder removal surgery and came out with a terminal cancer diagnosis. Five months and one week after his diagnosis, Tim was gone at age 48.
I am a couple and family therapist by profession. I have a master’s degree in clinical psychology, but no formal education in medicine. I was certainly caught off guard when the surgeon came out that first day and took me in a private room to discuss what he had seen inside of my husband. I had to make my first medical decision (do a biopsy and pull out, or open him up and take out the gallbladder).
Choose your doctors carefully
This can take time and a great deal of patience, but make sure you have a doctor you feel totally comfortable with. They should be accessible, listen carefully to your concerns, and be thorough in their follow-through. If you feel you can trust them, then you will also be able to trust their referrals when you need various specialists and surgeons.
I had no idea how to answer my husband’s surgeon, but I was able to ask with confidence, “What would you do if this was your wife?” He was able to tell me the decision without hesitation (biopsy and pull out). Turns out it was the best medical decision to make. The next five months before his death were filled with what felt like thousands of decisions. Being armed with a great medical team is crucial.
Be a patient advocate
Whether it is for yourself, your spouse, your parents or another loved one, you can (and should!) be a prepared patient advocate. One of the simplest and most effective tools you can possess is a notebook. Yes, you read that correctly. A notebook. Discipline yourself now. For every doctor’s appointment, test, procedure, etc., take a notebook with you. Write down names, dates and times, along with the major points of what you are hearing. Make sure your health professionals know you are doing so. Those who are practicing with a high level of ethics will have no problem at all with it. In fact, they will probably encourage you to do so. Keeping your history is vital, but more importantly, your medical team will be especially vigilant in taking care of you or your loved one.
Fill out health care proxy forms
A health care proxy is a person who is able to make medical decisions on your behalf, should you ever be unable to do so for yourself. Your doctor should be able to provide you with health care proxy forms, and there are also templates available online. (They vary by state, so the best way to access one is through your state health department’s website.) You want to pick someone who will do their best to respect your wishes for your life and care, should you be unable to speak for yourself. That is why it is so important for you to consider the tough questions, and then communicate them clearly in writing. You must then make sure your health care proxy fully understands your wishes as well. How far should medicine go in keeping you alive? Will this change based on your age? These are just some of the questions these forms will cause you to think about.
Nurture your spiritual life
Nothing makes us consider the condition of our spiritual life and the afterlife more than contemplating our mortality. How does your belief in God affect your medical decisions? Do your spiritual views bring you comfort when considering the fact that all life has an expiration date? When my husband was ill, our church family was vital in keeping us supported. They helped us in every way imaginable. I am glad that we had sought out a church “home” before we found ourselves in an unexpected crisis.
So, don’t be afraid. Get thinking. You aren’t going to jinx yourself, I promise. It’s not morbid, it’s realistic. If you are willing to take a look at the hard stuff, you might experience some amazing things, like we did. While those five months were the toughest of our lives, we also were closer than we ever dreamed we were capable of being. Life and death. Beginnings and endings. It’s all there. Try and embrace it all.