Updated: May 21
If that title sounds like Greek to you, it’s probably time that you learn a little about some legal aspects of your health care.
In this post, I'll go through the documents that collectively make up the "advanced directives." I realize that reading about these documents will feel uncomfortable for nearly all of you. I'm truly sorry for that. I encourage you to persevere through this, as preparation now may save you from some significant difficulty later.
This won’t be applicable to every cancer patient, however. The more severe your disease is, the more relevant these become.
It’s best to do this with a probate lawyer, and I’m not one, but I am board-certified in patient advocacy and can quickly run through what each document does for you and why you may need to have these completed.
HIPAA Release Form: HIPAA (Health Insurance Portability and Accountability Act) is the law that protects the privacy of your health information. It’s illegal for doctors, nurses and medical facilities to share your medical information with others without your consent. Signing a HIPAA release form will allow others in your family to discuss aspects of your care with the medical staff.
There is no standardized HIPAA release form that all providers share. Google “PHI Release Form St. John's Santa Monica” (or whatever your hospital and city are) and this form may come up in the results. If it does not come up, call in to your providers’ offices and hospitals to obtain the document.
Competent office staff will put this document into your electronic medical record, but it's wise for your loved one to have a copy available nevertheless.
Living Will: A living will serves to inform doctors and nurses how you want to be treated if you are dying or permanently on life support and cannot make your own decisions about treatment.
Durable Power of Attorney for Healthcare: This document allows you to name a proxy, also known as a “representative,” “surrogate,” or “agent.” The person you choose as your proxy can make medical decisions on your behalf if, for whatever reason, you are not capable of doing so yourself. The proxy should be familiar with your values and wishes in case a situation arises where your living will does not cover some unforeseen circumstance.
DNR and DNI: A DNR is a “Do Not Resuscitate” document. This document directs healthcare workers not to perform any interventions that would return your heart to its normal function.
A non-hospital DNR is a separate document that should be drafted in case you are not inside a hospital while resuscitation is needed. It's particularly important if your are entering end of life care outside a hospital, including in one’s own home or in a hospice setting.
A DNI is a “Do Not Intubate” order. This prevents doctors from putting you on a ventilator, which entails sedating you (putting you "under" or putting you "to sleep" with anesthesia) and intubating you (putting a tube down your throat) so that your lungs continue pumping to keep you alive.
Tissue Donation Directive: No, not that kind of tissue--although that may be appreciated during these crazy Covid days as well. We are talking about organs and tissue here. There are lots of parts in our bodies that can be recycled. This document allows you to donate them easily and without hassle.
POLST / MOLST: The POLST is a Physician Orders for Life Sustaining Treatment; in some states it’s called a MOLST, which stands for Medical Orders for Life Sustaining Treatment.
As one nears the end of life, it often becomes easier for physicians to predict what scenarios may occur. Thus, this document can be quickly drafted towards the end of life to account for anything that isn’t covered by the living will.
Again, not every cancer patient will choose to draft these documents. With increased age and increased disease severity, you’re more likely to need them.
If you are on Medicare, your primary care physician is reimbursed to assess these advanced directive decisions with you, at no cost to you. Your oncology center should be able to help as well.
I encourage you to read more about these documents; the NIH’s National Institute on Aging has a more detailed overview that will help you.