It’s important to have discussions about what you want the end of your time on earth to look like and have a healthcare proxy and an advance directive in place.
When my sister and I were teenagers, my mom sat us down, and in a potentially more dramatic fashion than the moment called for, she said, “Girls, my death could happen any moment, and we need to talk about it.”
Okay, maybe those weren’t her words exactly, but that’s how I remember it. My mom, who is still alive today and has much more energy than I do, is a nurse. And she has always felt that talking about the end of life is important. She had seen families argue over whether or not to take a loved one off a ventilator, she watched as grandkids demanded that everything be done for a grandparent when medical interventions were more painful than life-sustaining. My mom has been a nurse for over forty years, and she has seen a lot of death. When she sat us down to talk about what she eventually wanted at the end of her life, it wasn’t in the macabre spirit of The Addams Family, it was because she had seen what happens when you don’t have these discussions.
Now, as a third-year medical student, I truly understand why she started talking about these topics when my sister and I were so young. During my surgery rotation in particular, I saw families struggle with what to do when their loved one was only being kept alive by a ventilator. I watched individuals struggle to come to terms with the fact that their death was closer than they anticipated.
Death is unsettling. For so many of us, it is terrifying. But it is also part of life. One day, we will all die, and it’s important to have discussions about what you want the end of your time on earth to look like. We’ll break down how to talk about end-of-life care and healthcare decision-making and how to make it less sad by taking ownership of how you want things to look.
So how do you even bring up such a sad topic?
Sometimes, life makes the decision to bring up end-of-life care, even when you’re not ready. For example, when I was diagnosed with a pituitary tumor (it’s benign and I just get a scan every once in a while to make sure it’s not growing!), I didn’t know if I was going to have to have surgery or not. So I had to have some very intense conversations with my partner about what I wanted if something happened during a potential surgery. In my case, life circumstances made me have “the talk.” But it’s often better to discuss these things before you actually have to.
You can let the family and friends you want to discuss this with know that the talk is coming. It doesn’t have to be dramatic, like the way my mom started the conversation. You can say something like, “I’ve been thinking about my health and future decisions and I’d like to talk to you about it.” You can also start the conversation with your primary clinician and see if they have suggestions for how to broach the subject with friends and family. The added benefit of your clinician being part of the conversation is that they can document your wishes in your healthcare chart. Some people also recommend having the discussion around a life event, such as when a milestone birthday approaches.
Starting the conversation is the hardest part, and it can feel a little awkward, but going in with a plan can help things feel more natural.
What should you cover during your talk?
The Conversation Project, which is an initiative led by the Institute for Healthcare Improvement, has some great starter forms that can help you think about what is important to you. Some topics you can cover in your discussion can include:
- How do you want to make healthcare decisions?
- What measures would you/wouldn’t you want? For example, do you want CPR (cardiopulmonary resuscitation, which is done when someone stops breathing or their heart stops) performed? What about being on a ventilator or having a feeding tube?
- Would you want to donate organs?
- How would you want your spiritual needs to be honored at the end of your life?
- Do you feel like quality or quantity of life is more important?
- Who would you want to make decisions for you if you couldn’t make them on your own, in other words, who is your healthcare proxy?
What is a healthcare proxy?
A healthcare proxy is a person you decide should make healthcare decisions for you if you can’t tell your care team what you want. This person is supposed to make decisions based on what you would want and in your best interest. Your healthcare proxy doesn’t have to be family. It can be anyone you trust and who is willing to do it. For example, I know someone whose healthcare proxy is their neighbor! Generally speaking, if you don’t have a healthcare proxy in place, your next of kin would make decisions for you. Your next of kin can be your spouse, your siblings, or your children (as long as they are over 18). The reason a healthcare proxy is so important is because that person will have discussed your wishes with you, and there is less of a chance of well-meaning family members making decisions you wouldn’t want. Note that the person who counts as next of kin can be different in different countries!
The American Bar Association has a helpful healthcare proxy guide that you can share with the person you want to make decisions for you.
How do you decide what should be done and when it’s okay to stop medical intervention?
This is a very personal decision! Some people want every possible intervention, and some people just want to pass when it’s their time. This is where having a conversation with a clinician can go a long way. They’ve seen these interventions firsthand, and often have performed them, and can give you some insight into what treatments like CPR, ventilator support, or even feeding and hydration support would look like. One of the most important questions to ask yourself in all of this is whether quantity or quality of life is most important to you. Once you know the answer to that question, it can help guide your decisions about end-of-life interventions.
It’s important to document what you want through an Advanced Directive, which is a legal document that goes into effect if you can’t communicate what you want. The American Bar Association has links to free state-by-state Advance Directive forms.
What happens if your family doesn’t agree with you?
Let’s say that you don’t want a lot of interventions if something happens to you, but your family, because they love you and obviously don’t want you to die, would prefer that everything is done to keep you alive. These sorts of disagreements are pretty common and highlight the importance of making sure you have a healthcare proxy and an Advanced Directive. As difficult and as uncomfortable as these conversations can be, talking about it before you need to can make everyone feel better when the time comes.
How does your healthcare team play a role in end-of-life care?
As it turns out, there is also an entire medical specialty devoted to helping people with serious illnesses, and those facing the end of life have the best quality of life left possible. This specialty is called palliative care. Though how these specialties work varies across countries, overall, palliative care is an incredible specialty that works to ease someone’s passing, to make sure their last weeks are as comfortable as possible. They do this by managing symptoms (like pain), providing emotional support for processing a diagnosis, and helping with resource access. Hospice care is care provided in the last few months to weeks of life.
It can be really scary to talk about death and dying. But it’s really important to talk about it before something happens. Give yourself the space to think about what feels right for you.
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