Benjamin Franklin once told us the only two certainties in life are death and taxes. Despite death being certain, we ignore it. We try our hardest not to think about it, and we try our hardest to prevent it. We deny its existence until it is inevitable rather than confront the reality and plan for it. As someone who was exposed to death at an early age and was not shielded from open and honest conversations about it throughout my life, I’ve always understood the importance of confronting death and engaging in advanced care planning; but even I took my good old time going beyond just talking about it to officially putting my wishes into writing.
Some of my earliest childhood memories revolve around my great grandmother dying of cancer before I started kindergarten. I remember helping my grandmother give my great grandmother her pills, and I remember playing with a toy car while my family visited my great grandmother in the hospital as she was connected to various tubes. I don’t remember seeing the tubes going into her body, but I remember looking at them connected to machines around her bed. I also remember my mother saying she never wanted to die slowly in a hospital connected to machines.
Fortunately, I don’t remember this as being a traumatic experience for me, nor do I remember just how traumatic this experience was for the adults in my family. I simply remember that from this point on, I understood that death is a part of life you cannot ignore no matter how much you want to. Death was never a taboo topic in my home growing up, and the idea of dying with dignity and maintaining quality of life came up often; however the conversation never went beyond the verbal, “I don’t want to be kept alive if…”
Fast forward to my undergraduate years, and my other grandmother suddenly ended up in the hospital. I don’t ever remember her talking about what measures she did or didn’t want to save her life, and she didn’t have any advanced directives on file. After a few days on machines, the doctors asked our family to decide whether to remove my grandmother from life support. My uncle – her oldest son – led the discussion and asked for our opinions before he made a decision. I don’t know what would’ve happened if we weren’t all in agreement. I do know that while I will never regret being in agreement because we did what was best for her, it was also the hardest decision to make and the memory still brings tears to my eyes. At that moment, I understood the importance of having these conversations and making these decisions early so my family isn’t faced with having to make these decisions. And I understood the importance of official paperwork, although I dragged my feet on that until I was married because as a college undergrad, I figured there was no rush.
Early on in my relationship with my husband, long before we got married, I made it known that I never want to be kept alive by machines. This was never a secret, and I wasn’t afraid to let others in my family know this. A few years after getting married, I was fortunate enough to work for a healthcare college that hosted a Death Cafe. I spoke with faculty members and other college staff about the importance of open and honest conversations about death and, perhaps even more importantly, having the proper paperwork in place. Although the point of the cafe wasn’t to get advice on advanced care planning, I learned about a form called a POLST in addition to a living will. Shortly after that, my husband and I got paperwork in order for our advanced care planning.
Advanced Care Planning Decisions
According to the National Institute on Aging (n.d.), common decisions that need to be made about end of life care include whether to administer CPR to restore your heartbeat, whether to use ventilators (breathing tubes), whether to use feeding tubes or IV fluids if you’re unable to eat or drink, and whether to forgo life-saving or life-sustaining treatment for palliative care so you can live out your final days as comfortably as possible. You can learn more details about each of these decisions on the Institute’s website.
Another part of advanced care planning is organ donation. There are scenarios in which you can be a living organ donor, but in those cases, you are able to consent to your own donation. After death, if you haven’t signed up to be an organ donor, your loved ones will have to make that decision if your organs are still viable.
Advanced Care Planning Documents
You can have discussions with family about your wishes, however discussions are not legal documents. Once you put these decisions into legal paperwork, they are known as “advanced directives.” Two common advanced directives are a living will and a health-care power of attorney. A living will explains what treatments you do and don’t want should you become unable to communicate your wishes. A health-care power of attorney is someone you designate to make health decisions on your behalf should you become unable to communicate about your health. Both of these advanced directives are legal documents, but they are not physician’s orders; thus, they can be used to guide decisions, but standard treatment protocols still dictate your care.
A POLST complements advanced directives because a POLST is a document that contains medical orders. These medical orders can override standard treatment protocols. When you are diagnosed with an advanced, life threatening illness, you should have a conversation with your doctor about a POLST form so this can be completed and become part of your medical records. You can learn more about POLST forms on the National POLST website. You can also learn more about the differences between a POLST and advanced directives and where a POLST enters the process on the POLST website.
Organ donation is part of advanced care planning, although it doesn’t require the same paperwork as advanced directives and a POLST. You can sign up to be an organ donor through your state’s registry or when you renew an ID card or driver’s license through your state’s department of motor vehicles. You may receive an organ donation card, and it will be noted on your driver’s license or ID. While this may seem like the simplest advanced care planning, there are myths that prevent people from signing up to be an organ donor; for example, people may mistakenly believe that if you’re an organ donor, medical staff will not work as hard to save your life. The Mayo Clinic (2021) dispels this and other organ donation myths.
Start Young and Communicate
It’s important to begin advanced care planning when you’re young. Although death is often far from your mind, it can happen any time and you should be prepared. Dr. Brian J. Young of Penn Medicine Lancaster General Health (2021) offers tips for talking to your 18-year-old about advanced care planning. It’s also important to revisit your plans at various points throughout your life to ensure your wishes are still accurately reflected and are communicated with your family. MedlinePlus (2021) provides additional information on advanced directives to help you have informed conversations about your plans with your physicians and your family.
Christina J. Steffy 