Dr Amy Tan, Calgary, AB, Canada
I remember the snow falling lightly that early December morning, leaving just a skiff on the road. I savoured my second cup of black coffee after my husband left for work, contentedly admiring the red and silver ornaments on the Christmas tree we had just put up in front of the huge picture window in our newly purchased first home. I dressed in a red and brown striped turtleneck sweater and chocolate brown slacks, put on my blue wool pea-coat and left for work in a good mood. As a first-year family medicine resident, I anticipated a full day in clinic, helping and learning from patients. I headed up the single two-lane road connecting the small town where we had gotten married and now lived, north into the city.
The snow circled around in front of me but my wipers needed only to streak through intermittently. Five minutes from home, driving behind a white Pontiac Sunfire, I abruptly skidded on black ice beneath the swirling snow, lost control of my navy blue Toyota Echo, and veered into the oncoming lane. I inexplicably missed the guard rail of a small bridge on the other side of the road to then flip over into a ravine under the bridge. The world went into slow motion and with sheer terror I knew that there was nothing I could do to stop this. When the car stopped with a thud, I wiggled my toes to see if I was paralyzed as searing pain ripped through my back. Out of nowhere, my guardian angel started talking to me, a stranger whom I will never forget, but whom I never actually was able to look at to identify. “Do you know that you’re upside down? Your car landed on its roof” she asked. “We’re under the bridge; I don’t think you can see your car from the road now.” I had no idea. “What’s your name?” I remember her asking. Sadly, I can’t remember her name. I am eternally indebted to this kind woman for stopping after witnessing my car tumble off the road, calling 911, climbing down the ravine and keeping me calm in those first surreal moments.
Trapped, I couldn’t free my left hand from an awkward angle above my head and it felt like I was folded in half too much with my seat-belt across my neck. My teeth chattered as I shivered; I struggled to breathe. I had no concept of time now. I had so much pain. A lot of different voices ebbed and flowed around me. “Is it here yet?” I remember asking. “Soon, it’ll be here soon, Doc”. My panic rose just as the emergency crews extricated me with the Jaws of Life after it finally arrived on scene. The screeching of metal echoed as the literal weight of my car lifted off me. “Remember, Doc, you can’t move once it’s off even if you want to”.
My pager had gone off as I was rushed into the priority room of the emergency department in the community hospital where I was training because I was late for clinic. I can still remember how the hood of my husband’s winter jacket framed his pale face and wide eyes as he leaned over the stretcher so that I could see him when he arrived at the hospital. I can recall so many of these initial details up to my rescue and then only a smattering of other memories from that first month in hospital. Random memories such as my husband asking if the nurses could take my wedding rings off my badly damaged left hand. “If you don’t want her to move, you better not threaten to cut off those rings,” my husband had said. And weeks of having to lie flat on my back in pain, staring at the speckled square tiles on the ceiling of the hospital room that I shared with 3 other patients after upgrading from the Neuro ICU. I had a collapsed lung full of blood, and unstable vertebral fractures in 4 different places in my spine. I had other injuries requiring surgery and treatment decisions, and of course, the psychological trauma from this ordeal.
I WAS SO LUCKY. I was lucky to be alive, lucky to not be paralyzed at this point, and lucky to have not suffered a significant brain injury.
But, this isn’t a story about how I have thankfully learned how to persevere and recover to a new normal, and establish my academic medical career despite chronic pain. Nor is it a story about how I can’t wear chocolate brown pants anymore. Nor about finally learning not to take life for granted and trying to live a purposeful life of gratitude. Don’t get me wrong, I am absolutely grateful I have gotten to this place after almost 15 years and even more grateful that I now have a wonderful life with my husband and young son. But this is not the purpose of this story here today. It’s not even about why I feel so strongly about compassionate person-centred care and the patient’s experience in healthcare.
This is a story to convince you that you need to engage in advance care planning (ACP) with your loved ones TODAY.
I wasn’t in any condition to make any decisions for the first several days after this trauma. I was too panicked, too confused, too disoriented while flat on my (broken) back in full spinal precautions, too pained, too drowsy and too heavily medicated to understand much after arriving at the hospital.
My husband of two months ultimately had to weigh the pros and cons for numerous decisions in short order. He had to decide whether I should undergo a surgery that could have stabilized my spinal fractures quickly, but had high risk of complications including paralysis. He had to tell the trauma team what he thought would be important to me in terms of best possible outcomes for other injuries and concerns.
Remember, it was an awful time for him too. He isn’t in the medical field; he was scared beyond comprehension for me, and now he had to make big decisions for me too without really understanding all the nuances of what was happening. He humbly downplays the huge responsibility he had when reflecting on this today.
I was 24 years old, two months married, a first-time home-owner, and five months into my residency training program when this trauma occurred; the prime of my life as they say. I was happy and looking forward to all these new, exciting chapters in my life, and in our life together. I didn’t have a personal directive, or an advance care plan completed. I didn’t have a will made up yet. I wasn’t prepared for a life-changing event that day. My husband and I had had abstract conversations about the concept of quality of life. But we definitely hadn’t talked about concrete wishes we each had should the unthinkable happen and we wouldn’t be able to communicate or make decisions for ourselves. We were going through wedding and honeymoon pictures and deciding which ones to enlarge and put up in our new house!
Through hard work, persistence, support from family and friends and my husband’s amazing caregiving, I fortunately recovered enough to complete my residency training and have been a practicing family physician since 2005. As part of my practice, I visit patients in their home who are living with terminal illnesses and provide end-of-life care to patients in hospice. As a researcher and educator, I teach future and practicing doctors about understanding the patient experience, honouring each patient’s individual story through empathy and the power of effective shared decision-making with patients and families. I have seen the downstream effects of ACP done well. Too often though, I have seen the distressing effects for patients and families when ACP is left too late or not done well. This all compels me to advocate for early and ongoing advance care planning.
But it is my own story that truly makes me so passionate about advance care planning. ACP isn’t only about death or end-of-life. It’s about making plans should there be ANY time (temporary or permanent) that you cannot make decisions or speak for yourself. ACP is about being prepared, not pessimistic. This might just be the best gift you could give your substitute decision-maker (proxy) and really, yourself. Pick the right person for you to speak on your behalf should you ever need it and discuss with him/her about what is important in life for you. These conversations may be the most enriching of your relationship with this person. This gives your proxy some concrete guidance in making these decisions for you. These conversations will help your health care team better understand you, your priorities and your values to make decisions that can better serve you.
It is never too early to complete your advance care plan until it’s too late. Please do this NOW so that those you cherish the most will never have to be in the position I unwittingly put my dear husband in.
Thank you for reading my story.
Now that you know WHY you need to complete your advance care plan and discuss it with your loved ones and healthcare professionals, here are some great resources that will help with WHAT you will need to do and HOW: