I’ve been trying to figure out when is a good time to mention my recent family emergency and this part in the process seems the most apropos. A little more than a month ago, my father ended up in the ICU for respiratory issues and his condition deteriorated to the point that he was in a medically induced coma, put on a ventilator and tube fed. The doctors told us that after two weeks on a ventilator, we would have to make a decision: to take him off the ventilator and hope that he can breathe on his own, if he can’t than Hospice can make him comfortable until he passes OR do a tracheostomy which would mean in his case that he would be on a ventilator for the rest of his life. Two weeks is their ventilator maximum because the tube then begins to erode the lining of the trachea causing permanent damage.
Now, being a death doula, I knew to ask about if he had appointed a health care proxy or made any indication of his wishes before he had crashed, but he unfortunately hadn’t. Since there was no health care proxy, these decisions fell to his next of kin which was my brother and I. We discussed what we thought dad would want and we easily decided that there was no way he would want to live on a ventilator. So this brought us to how we went about conveying that to the medical staff at the hospital. This is when the MOLST (Medical Orders for Life Sustaining Treatment) form saved my dad. I had made a copy of the MOLST even before I got to the hospital so I knew what questions we would be asked to consider: Does dad want cardio pulmonary resuscitation?, Does he want to be on a ventilator?, Does he want to be intubated?, Does he want a feeding tube? and For how long does he want these interventions?, etc… Since they had already intubated him, put him on a ventilator and inserted a feeding tube, those actions were already in play by the time my brother and I stepped in. What loomed over us was the tracheostomy because at the time we weren’t sure if we were condemning dad to death without one. We went with our gut and wrote on the MOLST that he was not to have a tracheostomy. The next day, I handed it to the doctor and we briefly reviewed the form together. Over the next few days, medical personnel knew that the tracheostomy was no longer on the table so their focus became weaning him off the oxygen. I’m happy to report that two days before the tracheostomy would have to be done, he successfully was taken off the ventilator and is now feisty as ever. Once he could speak, the first thing he did was thank me for my decision. I’m grateful that MOLST and health care proxy forms exist. If they didn’t, he probably would remain on a ventilator until he faded away and our family would not get to enjoy anymore time with him.
The MOLST (or POLST) form is something that is usually given to you by your doctor when you have a life-limiting illness, are placed into a long-term care facility or something that you may ask for if you are certain that you do or do not want particular life-sustaining measures (or even if you want them but only for a limited time, you can convey that on the form). When used in a hospital setting, it’s on a special colored sheet of paper so they know that it’s the official document. For non-hospital settings it’s used to convey to emergency personnel what your wishes are (for example, if you want CPR or not). In order for the form to be honored by EMS, home care agencies and hospices, the form must be signed by a doctor. What I can’t recommend enough though is filling out a copy before something extreme happens, even if you don’t have a life limiting illness and don’t want to get a doctor’s signature. If you’ve filled out your living will than you will find the questions repetitive but in this case redundancy can’t hurt. Having it there for guidance would be helpful. Put it in your magnetic fridge folder and also give a copy to your health care proxy. If we had at least a copy of a filled out MOLST from my dad, than figuring out what to do would have been a no-brainer for me and my brother.
Things to know:
- If someone doesn’t have a designated health care proxy then the decision-making falls to the surrogate or next of kin which is the spouse (if not legally separated from the patient) or domestic partner, a son or daughter 18 years of age or older, a parent, a brother or sister 18 years of age or older or a close friend, in that order.
- If you’re wondering about the DNR (Do Not Resuscitate) order, only a doctor can sign that form and it only covers CPR, not the rest of the interventions on the MOLST.
- Make sure that when you or your loved ones transfers from one place to then next, that the MOLST/DNR is updated and still applies. For example, if a loved one is in the hospital and has a filled out MOLST/DNR but then they are sent home, that hospital document may not apply. A non-hospital version may have to be filled out.
Each state has their own version so I’d advise you to just Google “MOLST” or “POLST” and your state name. Here is New York’s version.