A Gift for Your Loved Ones
Communication Priority: The Need for Advance Care Planning
Most of us would do anything for our families. We’d give our lives for our kids and go to great lengths to spare them unnecessary pain. Yet, one of the most important conversations we can have with our loved ones, and one of the greatest gifts we can give them, rarely happens.
I learned about this need from my work in healthcare, where they're asking physicians to normalize this conversation with patients. However, I think we need to understand this priority and take responsibility for it. After all, it is our loved ones who will suffer without it.
This discussion involves making your loved ones aware of your choices should you face a medical situation where you cannot speak for yourself. We all know this can happen. A sudden illness or tragic accident could cause a serious condition that makes you unable to communicate (think of a stroke or brain injury). In this state, medical decisions continue to be made and some of them will dictate not only your current state but the rest of your life. Without knowing what you would want, your family and physicians will be in the position to choose your medical treatment for you, where they guess, fret, agonize, and argue about what you would have wanted or what they want for you.
These decisions could lead to you existing in a state you wouldn’t want to be in. This can include continuing in a vegetative state on life support; extending your suffering even though your life won’t return to normal; or stopping futile treatments and allowing your life to end. Forcing these decisions on your loved ones puts them in an extremely difficult position.
Making your medical choices known takes a tremendous burden off your loved ones and ensures your choices are followed. I know this first-hand. My father suffered from dementia, and we had no idea where his illness would lead our family. But the day came when this most loving, generous, decorated-war-hero of a man presented a risk to himself and others. He had to be taken into care, almost considered a sin in our culture, and it haunted our family for years.
My dad had always been a planning kind of guy who ensured my mom would be set financially after he was gone. He was the guy who helped his family, neighbors, and even strangers stranded on the freeway. So, when his horrible illness took complete control of his mind, I had to believe he would never want to be a risk to my mom or anyone else and would want us to put him somewhere safe. But I didn’t know that. I didn’t hear him say it. This made every day of the three years he was in a facility an agonizing, guilt-ridden, and heartbreaking experience. Harsh judgements from some family members didn’t help.
My father's physician could have played a role in getting my dad to think about potential scenarios and plan accordingly. In healthcare, this process is called Advance Care Planning (ACP). Most people realize this planning is required for those facing serious illness or for the frail elderly, who need to decide what medical treatment they do and don't want in end-of-life care. For example, some may want to be on life support, other won't.
Experts say that anyone over 19 should get comfortable talking about ACP, and the first step is to consider what “quality of life” means to you. Geriatrician and physician expert in hospice and end-of-life care, Anna Loengard, MD, explains that ACP is more than deciding if you’d want CPR or not. Most healthy young people would want that and everything else to save their lives. You need to think, she says, “If you were in a persistent vegetative state, would that be a good quality of life for you? Would you want doctors to keep you going? It may be obvious that of course you want everything done, until you realize that it’s not going to bring you back to your former level of independence.”
A discussion with your loved ones about what you consider a good quality of life would likely include expressing your values and how you want to live. For some living with severe dementia or in a nursing home would be OK. For others, living independently is the priority, and a bedbound state would be unacceptable. This is about making your values known. Those choices may likely change as you age or face new illness, but the more we get used to these conversations, referred to as “normalizing” in healthcare, the more comfortable we can be having the discussion.
While making certain choices can be legally documented in Advanced Directives, such as wanting a feeding tube or declining CPR at certain stages of life-ending disease, Loengard says, “It’s impossible to note every single eventuality that might befall you from a healthcare perspective or to check yes or no to every procedure that might be proposed. But you can say ‘I want to live independently’ or ‘I wouldn’t want to be bedbound.’ It may not be a matter of if you want CPR or be in the ICU, it’s more what will my family do when it’s obvious I won’t be put back in the shape I was in.”
Currently, primary care physicians and their clinical teams are being encouraged to have these conversations with patients, get a patient’s choices in the medical record, and have discussions with families about these choices. Right now, most directives are for physicians to have ACP discussions with patients 65 and over, but care teams are also asked to start to normalize this discussion with younger patients. The theory being that if people can get used to talking about end-of-life care, then as patients age or develop serious health conditions, the discussions aren’t so daunting for all involved. It’s also there for emergencies.
But this has to be our priority because it’s our lives and our loved ones who are impacted. Primary care physicians are already overwhelmed by what’s expected of them, and even if they have time for this discussion, they need us be able to talk about it.
It’s not an easy task to ask our loved ones to discuss losing us or for us to talk about losing them. But if we draw on our love for our family, we can do it. Courage up, fear pushed aside, it’s time to give this gift to our loved ones.
To learn more, go to The Institute for Healthcare Improvement’s The Conversation Project or talk with your physician.